Neuropsychological Report Writing [1 ed.] 1462524176, 9781462524174

Table of contents :
Dedication
About the Editor
Contributors
Series Editor’s Note
Preface
Contents
1. General Principles of Neuropsychological Report Preparation • Jacobus Donders and Carrie‑Ann H. Strong
2. Neuropsychological Reports for School‑Age Children • Kira Armstrong and Shannon M. Lundy
3. Neuropsychological Evaluation of the Medically Complex Child • Marsha Vasserman and Ida Sue Baron
4. Differential Diagnosis in Older Adults • Laura H. Lacritz and Heidi C. Rossetti
5. Psychopathology and Psychiatric Comorbidity • Robert M. Roth and Laura A. Flashman
6. Personal Injury Forensic Neuropsychological Evaluation • Glenn J. Larrabee
7. Criminal Forensic Neuropsychological Evaluation • Joel E. Morgan and Bernice A. Marcopulos
8. Pre- and Postsurgical Neuropsychological Evaluation: Illustrations in Epilepsy • Chris Morrison and William S. MacAllister
9. Evaluation for Treatment Planning in Rehabilitation • Kirk J. Stucky and Thomas J. Gola
Index

Citation preview

Neuropsychological Report Writing

Evidence-Based Practice in Neuropsychology Kyle Brauer Boone, Series Editor Clinical Practice of Forensic Neuropsychology: An Evidence-Based Approach Kyle Brauer Boone

Psychological Assessment: A Problem-Solving Approach Julie A. Suhr

Validity Testing in Child and Adolescent Assessment: Evaluating Exaggeration, Feigning, and Noncredible Effort Michael W. Kirkwood, Editor

Neuropsychological Report Writing Jacobus Donders, Editor

Neuropsychological Report Writing

Edited by

Jacobus Donders

Series Editor’s Note by Kyle Brauer Boone

THE GUILFORD PRESS New York  London

Copyright © 2016 The Guilford Press A Division of Guilford Publications, Inc. 370 Seventh Avenue, Suite 1200, New York, NY 10001 www.guilford.com All rights reserved No part of this book may be reproduced, translated, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the publisher. Printed in the United States of America This book is printed on acid-free paper. Last digit is print number: 9 8 7 6 5 4 3 2 1 The authors have checked with sources believed to be reliable in their efforts to provide information that is complete and generally in accord with the standards of practice that are accepted at the time of publication. However, in view of the possibility of human error or changes in behavioral, mental health, or medical sciences, neither the authors, nor the editor and publisher, nor any other party who has been involved in the preparation or publication of this work warrants that the information contained herein is in every respect accurate or complete, and they are not responsible for any errors or omissions or the results obtained from the use of such information. Readers are encouraged to confirm the information contained in this book with other sources. Library of Congress Cataloging-in-Publication Data Names: Donders, Jacobus, editor. Title: Neuropsychological report writing / edited by Jacobus Donders. Other titles: Evidence-based practice in neuropsychology (Series) Description: New York : The Guilford Press, [2016] | Series: Evidence-based    practice in neuropsychology | Includes bibliographical references and   index. Identifiers: LCCN 2015047550| ISBN 9781462524174 (pbk. : alk. paper) | ISBN    9781462524259 (hardcover : alk. paper) Subjects: | MESH: Neuropsychology | Medical Writing Classification: LCC RC346 | NLM WL 103.5 | DDC 616.8—dc23 LC record available at http://lccn.loc.gov/2015047550

To Kenneth M. Adams, for his critical support that allowed me, as a graduate student from The Netherlands, to come to the United States and embark on a career in clinical neuropsychology that I would not change for the world —J. D.

About the Editor

Jacobus Donders, PhD, ABPP (CN, RP), is Chief Psychologist at Mary Free Bed ­Rehabilitation Hospital in Grand Rapids, Michigan. He is board certified in Clinical Neuropsychology, Pediatric Clinical Neuropsychology, and Rehabilitation Psychology through the American Board of Professional Neuropsychology. His main interests include validity of neuropsychological tests and prediction of outcome after brain injury. In addition to being an active clinical practitioner, Dr. Donders has served on multiple editorial and executive boards, has published more than 100 publications in peerreviewed journals as well as four coedited books, and is an associate editor of Child Neuropsychology and Archives of Clinical Neuropsychology. He is a Fellow of the American Psychological Association and the National Academy of Neuropsychology.

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Contributors

Kira Armstrong, PhD, ABPP (CN), independent practice, Woburn, Massachusetts Ida Sue Baron, PhD, ABPP (CN), independent practice, Potomac, Maryland Jacobus Donders, PhD, ABPP (CN, RP), Mary Free Bed Rehabilitation Hospital, Grand Rapids, Michigan Laura A. Flashman, PhD, ABPP (CN), Department of Psychiatry, Geisel School of Medicine at Dartmouth, Lebanon, New Hampshire Thomas J. Gola, PhD, Department of Rehabilitation Psychology and Neuropsychology, Rehabilitation Institute of Michigan, Detroit, Michigan Laura H. Lacritz, PhD, ABPP (CN), Department of Psychiatry and of Neurology and Neurotherapeutics, University of Texas Southwestern Medical Center, Dallas, Texas Glenn J. Larrabee, PhD, ABPP (CN), independent practice, Sarasota, Florida Shannon M. Lundy, PhD, University of California, San Francisco, Benioff Children's Hospital, San Francisco, California William S. MacAllister, PhD, ABPP (CN), Department of Neurology and Comprehensive Epilepsy Center, NYU Langone Medical Center, New York, New York Bernice A. Marcopulos, PhD, ABPP (CN), Department of Graduate Psychology, James Madison University, Harrisonburg, Virginia Joel E. Morgan, PhD, ABPP (CN), independent practice, Morristown, New Jersey Chris Morrison, PhD, ABPP (CN), Department of Neurology and Comprehensive Epilepsy Center, NYU Langone Medical Center, New York, New York ix

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Contributors

Heidi C. Rossetti, PhD, Department of Psychiatry, University of Texas Southwestern Medical Center, Dallas, Texas Robert M. Roth, PhD, Department of Psychiatry, Geisel School of Medicine at Dartmouth, Lebanon, New Hampshire Carrie-Ann H. Strong, PsyD, ABPP (CN), Mary Free Bed Rehabilitation Hospital, Grand Rapids, Michigan Kirk J. Stucky, PsyD, ABPP (CN, RP), Department of Psychology, Hurley Medical Center, Flint, Michigan Marsha Vasserman, PsyD, ABPP (CN), Child Study Center, NYU Langone Medical Center, New York, New York

Series Editor’s Note

U

pon seeing the title of this book, Neuropsychological Report Writing, the reader might anticipate readability equivalent to that of a technical manual. However, what might have otherwise been a dry topic in other hands is instead, under the editorship of Jacobus Donders, a compendium of engaging and highly readable chapters, each written by respective experts in their specialties. Each chapter provides not only suggestions for report writing, but also the relevant “back story” (i.e., the relevant factors that need to be considered when selecting and interpreting tests in various patient populations). This book emphasizes practicality, with each chapter providing examples of “less desirable” and “more desirable” report-­writing styles as well as illustrative case examples. The information provided is critical for students in the process of writing their first reports, but even experienced neuropsychologists will find many of the tips and suggestions to be of value. In the first chapter, “General Principles of Neuropsychological Report Preparation,” Jacobus Donders and Carrie-Ann H. Strong present a thorough and organized overview of the critical issues in neuropsychological report writing, including how report formats change depending on the age of the examinee, and also such important topics as overinterpretation of isolated lowered scores, use of interpretative labels, and common interpretation errors. Of particular value, Donders and Strong summarize the guidelines that American Board of Clinical Neuropsychology reviewers are asked to consider when grading applicant report samples, thereby providing an “inside peek” as to report parameters that the boarding organization for clinical neuropsychologists views as essential.

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Kira Armstrong and Shannon M. Lundy, in their chapter, “Neuropsychological Reports for School-Age Children,” summarize issues unique to pediatric assessments, including information critical to obtain in the interview, and the necessity of deftly navigating mismatches between parental perceptions and those of school personnel regarding child symptoms and interventions. The authors emphasize that pediatric evaluators must have a solid understanding of school administrative procedures, policies, and guidelines, as well as of the federal and state laws that govern special education services and the range of accommodations, modifications, and supports that public schools are mandated to provide. Armstrong and Lundy address the topic of evaluating for special education eligibility, and they point out how neuropsychologists are uniquely positioned to integrate data from multiple sources. The chapter’s major emphasis is on how to produce reports that are useful to the educational system. Common flaws encountered in pediatric neuropsychological reports are also discussed, as well as useful resources to assist the beginning assessor. In Chapter 3, “Neuropsychological Evaluation of the Medically Complex Child,” Marsha Vasserman and Ida Sue Baron discuss the range of issues encountered in this population, such as testing in nonstandard environments, unique referral questions (e.g., lateralization or language and potential for decline postsurgery), and the effect of major family stresses precipitated by the child’s typically chronic medical issues. The authors address report writing both in inpatient and outpatient contexts, and they list nine helpful “rules” when writing reports for this patient group. In Chapter 4, “Differential Diagnosis in Older Adults,” Laura H. Lacritz and Heidi C. Rossetti deftly cover the specific issues encountered in neuropsychological evaluations of older individuals, including consideration of patient stamina when selecting tests, presence of sensory and motor problems (vision, hearing, tremor, etc.) that may interfere with test administration and complicate test interpretations, importance of ageappropriate test norms (and the lack of sensitivity encountered with some norms), and the importance of functional assessment (i.e., how test scores directly translate into real-world function) that may require administration of measures specific to this issue. The authors discuss navigating consent issues and communication of results when testing is to be used to measure capacity and for competency/guardianship purposes. They also emphasize that evaluators of older patients should have knowledge of differing symptoms and cognitive patterns in various dementing disorders, and they discuss the use of serial assessments when tracking mild cognitive impairment. The chapter concludes with common report-­writing mistakes. In “Psychopathology and Psychiatric Comorbidity” (Chapter 5), Robert M. Roth and Laura A. Flashman summarize the types of cognitive deficits found in various psychiatric conditions, such as schizophrenia, major



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depression, bipolar disorder, attention-­deficit/hyperactivity disorder, and posttraumatic stress disorder. They provide report-­writing recommendations in these populations and discuss how to effectively write reports for, and collaborate with, psychiatrists. The authors emphasize that report recommendations must be practical, and, in particular, they should identify resources, services, and interventions to assist with independent functioning in the community. In Chapter 6, “Personal Injury Forensic Neuropsychological Evaluation,” Glenn J. Larrabee discusses how these reports differ from standard clinical reports. In particular, he notes that in forensic neuropsychological reports, the evaluator documents not only test findings but also the reasoning process by which the conclusions were reached, with particular focus on grounding reports in peer-reviewed published literature. He further points out that in medical–­legal cases the focus should be on documenting the nature and extent of damages (i.e., functional loss) as well as cause, and that simply documenting cognitive impairment does not necessarily address the legal issue. Larrabee outlines recommended sections of the forensic neuropsychological report, as well as common errors encountered in medical–­legal neuropsychological reports. Joel E. Morgan and Bernice A. Marcopulos, in their chapter, “Criminal Forensic Neuropsychological Evaluation” (Chapter 7), define relevant terms in these assessments, the differences between civil and criminal assessment contexts, and types of referral questions in criminal cases (e.g., including questions of competency, diminished capacity, and not guilty by reason of insanity). Organization of criminal forensic neuropsychological reports is discussed, along with tips on writing for attorneys, judges, and juries. Neuropsychological assessment in death penalty cases is also addressed. In “Pre- and Postsurgical Neuropsychological Evaluation” (Chapter 8), Chris Morrison and William S. MacAllister outline the unique types of information that neuropsychologists provide in their reports on these patients, such as language lateralization, ability to cope with surgery, and expected postsurgery cognitive function. Also covered in the chapter is repeat testing and measuring “reliable change” in test scores, the importance of providing raw data in reports (so that subsequent evaluators can quickly compare scores), and writing reports useful for neurosurgical and neurology colleagues. In the final chapter, “Evaluation for Treatment Planning in Rehabilitation” (Chapter 9), Kirk J. Stucky and Thomas J. Gola discuss tailoring neuropsychological reports to the rehabilitation context, with emphasis on writing reports that are timely, succinct, and useful to the interdisciplinary treatment team. This focus should be on real-world functionality and address issues of safety, need for supervision, and whether accommodations

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Series Editor’s Note

and environmental modifications are indicated. The authors emphasize that prognostic statements should be carefully and appropriately worded, and that treatment commendations require knowledge of empirical data on treatment outcomes and availability of community resources. The descriptors I would use to characterize this book are “sophisticated,” while at the same time “practical” and “easily digestible,” and the recommendations contained therein will push the written work products of both students and experienced neuropsychologists to higher levels. As such, Neuropsychological Report Writing represents a critical addition to The Guilford Press Evidence-Based Practice in Neuropsychology series. A comprehensive treatise on the “nuts and bolts” of neuropsychological report writing has not previously been available, and this book should be on the top of the “wish list” for all clinical neuropsychologists. Kyle Brauer Boone , PhD, ABPP, ABCN Alliant International University Los Angeles Los Angeles, California

Preface

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linical neuropsychologists routinely assess persons with known, suspected, or disputed neurobehavioral impairment and then provide a written report that presents the findings, conclusions, and recommendations. Neuropsychological reports provide a permanent record of the services that were provided. In addition, depending on the setting, these reports can be used for a variety of potentially important purposes, such as feedback to a referring physician regarding differential diagnosis and treatment planning, advocacy with the schools for special education services, or informing the trier of facts in a legal context about the mental state of the examinee. The purpose of this book is to provide guidelines and methods for preparing neuropsychological reports that are evidence-based, yet intelligible and practically useful to the intended reader, while adhering to relevant ethical, legal, and professional standards. Considering that the format of the report will typically vary with the context and purpose of the evaluation, this book covers applications in various settings (e.g., educational, legal, medical) and pertaining to both adult and pediatric examinees. It is not intended to cover every possible scenario in which neuropsychological reports may be generated. Instead, it focuses on some of the most common practice settings of neuropsychologists who typically prepare written reports based on an in-person evaluation of an individual. All chapters in this volume were written by known experts in their respective fields. They have all used material from actual cases (with all identifying details disguised) to address the unique variables that need to be addressed in each particular context. Throughout the volume, they have

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Preface

consistently used a format of illustrating specific points by means of contrasting problematic versus more effective ways of describing the findings in neuropsychological reports, ranging from describing how the background is presented all the way to discussing the results and providing conclusions and recommendations. Although this book contains many practical examples of how to present information in the most useful manner to the reader, it does not offer any simple cut-and-paste, cookie-cutter, or boilerplate material. There are no shortcuts to preparing neuropsychological reports. The ultimate responsibility for the content and quality of the report lies with the practicing clinical neuropsychologist who has to consider the unique brain–behavior relationships in each individual patient, with due regard to the context in which the evaluation occurs. The various chapters will show that no single format for a neuropsychological report works equally well in any and all settings. I hope that the various illustrations of “less desirable” versus “more desirable” ways to present information in such documents will be helpful to practitioners in considering how to serve their examinees and referral sources most effectively and most efficiently.

Contents

1. General Principles of Neuropsychological Report Preparation 1 Jacobus Donders and Carrie‑Ann H. Strong Prerequisites Prior to Report Preparation  2 Technical Aspects of Report Preparation  6 Ethical and Professional Issues  8 ABCN Practice Sample Criteria  10 Lifespan Issues  13 Psychometric and Interpretive Issues  15 Case Example  17 Appendix 1.1.  Sample Complete Neuropsychological Report for Jane  26

2. Neuropsychological Reports for School‑Age Children 30 Kira Armstrong and Shannon M. Lundy Developmental Neuropsychological Considerations and the Assessment Process  31 Understanding Special Education Law and Eligibility Criteria  33 Determining Eligibility for Special Education Services: The Distinction between “Disorder” and “Disability”  34 Writing for and Collaborating with School Professionals  35 Technical Aspects of Report Preparation  37 Common Mistakes  43 Final Thoughts Regarding Report Writing for School‑Age Children  45 Case Examples  45

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Abridged Sample Neuropsychological Report  51 Appendix 2.1.  Abridged Sample Neuropsychological Report

for Joe Bruin  54

3. Neuropsychological Evaluation of the Medically Complex Child 62 Marsha Vasserman and Ida Sue Baron Complex Medical Conditions  63 Assessment Issues  66 Family Issues  68 Managing Long‑Term Prognostic Issues  68 General Report‑Writing Considerations  69 Writing for Medical Personnel  70 Other Considerations  73 Case Example  74

4. Differential Diagnosis in Older Adults 92 Laura H. Lacritz and Heidi C. Rossetti General Geriatric Neuropsychological Considerations  92 Pretest Considerations  95 Spectrum of MCI to Dementia  96 Writing for and Collaborating with Neurologists  97 Sections of the Report  98 Case Example  99 Examples of Conclusions  104 Report Recommendations  106 Reevaluations 109 Common Report‑Writing Mistakes  111 Appendix 4.1.  Sample Neuropsychological Report for Ms. Smith  113

5. Psychopathology and Psychiatric Comorbidity 118 Robert M. Roth and Laura A. Flashman Lifespan Issues  119 Neuropsychological Functioning in Selected Psychiatric Disorders  120 Collaborating with and Writing for Psychiatrists  127 Case Example  128

6. Personal Injury Forensic Neuropsychological Evaluation 143 Glenn J. Larrabee The Nature of Forensic Neuropsychological Practice  143 The Forensic Neuropsychological Report  146 Common Errors in Forensic Neuropsychological Reports  155



Contents xix Conclusions 161 Appendix 6.1.  Sample Summary, Impressions, and Conclusion Sections

from a Criminal Forensic Evaluation Report  163

7. Criminal Forensic Neuropsychological Evaluation 166 Joel E. Morgan and Bernice A. Marcopulos Civil and Criminal Forensic Exams  167 Typical Criminal Referral Questions  170 Writing for and Interacting with Lawyers, Judges, and Juries  175 Report Examples  180 The Death Penalty  188 Conclusions 189

8. Pre- and Postsurgical Neuropsychological Evaluation: 192 Illustrations in Epilepsy

Chris Morrison and William S. MacAllister Unique Aspects of Evaluating Patients with Epilepsy  193 Writing for and Collaborating with Neurological/ Neurosurgical Teams  193 Measuring Reliable Change  196 Report Components and Analysis with Selected Examples  197 Appendix 8.1.  Sample Neuropsychology Consultation Report  215

9. Evaluation for Treatment Planning in Rehabilitation 220 Kirk J. Stucky and Thomas J. Gola Standard Rehabilitation Report‑Writing Recommendations  221 Outpatient Report Commentary and Component Analysis  227 Summary 241 Appendix 9.1.  Sample Outpatient Neuropsychological Report  244

Index 253

Neuropsychological Report Writing

Chap ter 1

General Principles of Neuropsychological Report Preparation Jacobus Donders Carrie‑Ann H. Strong

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linical neuropsychology is the practice and science of dealing with brain–­behavior relationships and their implications for the daily life of individuals and their families. Assessment of persons with known, suspected, or disputed neurobehavioral impairment is the mainstay of the practice of most clinical neuropsychologists. Such an assessment has many important components, such as proper interview techniques, standardized test administration, understanding of domains ranging from psychometrics to neuropathology to psychopathology, and consideration of cultural and ethical issues. However, the resulting written report is the document that formally presents the clinical neuropsychologist’s integration and interpretation of all available information, along with a logical set of conclusions and recommendations. It is an important, though not exclusive, piece of feedback to the referring agent and/or the patient and family, provides a permanent record of the service, and often effectively serves as the clinician’s business card. The format and length of a clinical neuropsychological report will vary with variables such as the practice setting, the purpose of the evaluation, the primary target readership, and the clinician’s level of professional expertise as well as personal preferences (Donders, 2001a, 2001b). This chapter reviews some core aspects of most reports. This review assumes that the clinician has sufficient competence in the specialty of clinical neuropsychology, as described in the Houston Conference model (­Hannay et al., 1998). In addition, this review pertains primarily to narrative reports that

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are based on a comprehensive neuropsychological evaluation as opposed to the brief chart notes that may be more appropriate following a neurobehavioral status examination at bedside. First, we discuss some issues that should be considered prior to any report preparation. Second, we comment on technical aspects of writing style, with an emphasis on organization, clarity and intelligibility. Next, we address specific ethical and professional considerations that should be made when preparing reports. This then leads to a review of the criteria that the American Board of Clinical Neuropsychology (ABCN) uses for consideration of professional practice samples as part of the board certification process. We then consider how the nature and format of the report may differ with examinees across the lifespan. Most of this chapter focuses on the key aspects of the way the neuropsychologist can integrate all the available information in a manner useful to the reader. This includes a discussion of psychometric and interpretive errors that are commonly found in reports. Throughout, we highlight the importance of an evidence-­based approach that includes accurate interpretation of the data, leading in a logical manner to clear and defensible conclusions. In this process, we emphasize that in order to be useful, reports must not only address the referral question but also offer new insights as well as added value, and offer feasible recommendations that are supported by the available data.

Prerequisites Prior to Report Preparation It is important to conceptualize the content, purpose, and potential impact of a neuropsychological report, even before dictating or writing a single sentence. In this context, it must be realized that such a report can typically only be as good as the quality of the information on which it is based. That means that the clinician must have: • A good understanding of the referral question. • An accurate understanding of his or her professional role in the evaluation. • Familiarity with the condition of interest. • Access to relevant medical and (especially in pediatric cases) academic records. • Conducted a thorough interview and history, obtaining information not only about the presenting complaint but also about other potentially important variables. • Inspected results from a set of formal psychometric tests that were administered in a standardized manner, that are widely accepted in the professional field, and for which appropriate norms are available.



General Principles 3

• Reviewed behavioral and other qualitative observations during both interview and formal testing. • Considered results from freestanding and/or embedded performance and symptom validity tests. If clear reasons for the evaluation were not provided at the time of the referral, the clinician should contact the referring agent to obtain them (Axelrod, 2000). This does not mean that the clinician cannot address other issues that emerge as relevant during the course of the evaluation. It does facilitate giving specific feedback to the referring agent in a way that may help that person with further decision making. There are major differences between clinical evaluations, where a doctor–­patient relationship is established, and forensic evaluations, where the client is typically not the examinee (for more details, see Donders, Brooks, Sherman, & Kirkwood, in press). It is important for the clinician not only to be aware of those differences and their implications, but also to make sure that the examinee or his or her legal guardian clearly understands the nature and purpose of the evaluation at the time of obtaining informed consent and/or assent, consistent with standard 3.10(a–d) of the ethics code of the American Psychological Association (APA, 2002). Some degree of familiarity with the condition of interest is important because psychologists should only accept those cases that are within their area of expertise, consistent with standard 2.01(a–b) of the APA ethics code. Consultation with a colleague who has more experience with that condition is permissible and can be advantageous, particularly if the disorder or syndrome is rare or when there are confounding or complicating factors. A good understanding of the condition of interest will likely also guarantee that the tests selected are crucial to the nature and manifestation of the underlying pathology (e.g., inclusion of tests of speed/efficiency of processing in a case of traumatic brain injury [TBI]). It is standard practice to review all relevant records with regard to the case at hand (Baron, 2004; Jasper & Capuco, 2001). The nature of which records are most crucial will vary with the presenting problem and referral question. For example, in a case of an educational evaluation of a school-­age child, access to academic records is likely more important and feasible than when differentiating between mild cognitive impairment and dementia of the Alzheimer type in an elderly person. In some cases, it can also be informative to review additional records, such as those pertaining to employment or military service. If specific records were desirable for the evaluation but were not available, the report should state how this limits the scope of the conclusions that can be made. Especially in cases involving sudden disruption of cognitive processes, such as TBI and stroke, review of acute care medical records and neuroimaging reports is necessary in order to obtain accurate information about the nature and severity of the

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injury. Retrospective self (or family) report of injury variables is often not sufficiently reliable. Although clinical neuropsychologists are often known for piling on test after test, the importance of a thorough interview and history cannot be overestimated. This interview should address both the origin and progression of the presenting complaint as well as a review of symptoms that could be pathognomonic to the condition in question. In addition, the interview should inquire about a range of other variables that can potentially be confounding factors. These include, but are not limited to, issues such as early developmental history, family medical history, current medications, and complicating premorbid (e.g., personal abuse) as well as comorbid (e.g., financial compensation seeking) factors (for more details, see Sbordone, 2000; Vanderploeg, 2000). Use of collateral interview information can also be highly informative, particularly with patients at the extremes of the age spectrum (Donders, 2005; Jasper & Capuco, 2001). Whenever possible, neuropsychological tests should have been selected because they were known to be appropriately normed for the demographic background of the examinee, and validated for use in the condition of interest. A neuropsychologist working with a diverse population who fails to appreciate the potential influence of variables such as quality of education (Glymour & Manly, 2008) or level of acculturation (Boone, Victor, Wen, Razani, & Pontón (2007) on test scores is at risk of making interpretive errors. Particularly when new tests are used, it is important to avoid simply assuming that they measure the same constructs, or are as sensitive to cerebral impairment, as older or similar tests; particularly if there are no independent validation studies in samples with the condition of interest (Loring & Bauer, 2010). Whether the neuropsychologist personally administered the tests or used a properly trained technician to do so, behavioral observations can be of considerable informative value, with both children (Baron, 2004) and adults (Vanderploeg, 2000). These observations can include basic facts such as physical appearance, as well as specific variables that may reflect pathognomonic processes that the standardized tests do not always reveal. Examples could be the inclusion of neologisms or semantic paraphasias in the spontaneous speech of a person who does not demonstrate severe deficits during a test of naming to confrontation, or the subtle neglect of the left side of space that is noted only in the relatively more crowded environment of the hallway to the office. Behavioral observations may affect both test selection and interpretation. No neuropsychological evaluation is complete without considering the validity of the findings. Several professional organizations have advocated for the routine inclusion of measures of performance and symptom validity in the evaluation of adults (Bush et al., 2005; Heilbronner, Sweet, Morgan, Larrabee, & Millis, 2009). More recent research has also suggested that



General Principles 5

the same guideline should apply to pediatric evaluations (Donders et al., in press). It is important to appreciate that failure of a performance or symptom validity test does not automatically imply “malingering.” However, the potential relevance of such findings to the interpretability of the numeric test findings must be considered prior to preparing the clinical neuropsychological report. Eventually, it is the integration of all the above-­mentioned variables that should drive the message of the written neuropsychological report. That means that the report should be clearly organized in the mind of the neuropsychologist, prior to its initiation (Williams & Boll, 2000). First, it can be helpful to think about the referral question and to determine how to answer that question in the clearest and most evidence-­based, succinct manner. The next step is to decide what else the reader should know and what the follow-­up plan should be. This is where a report can have incremental value, as opposed to just regurgitating what is already available in other records. We have found it helpful to think about what we would really want to include if we had to leave a voice mail for the referring agent, and we had a 60-second time limit for it or, in the case of an e-mail, a 250-word limit. Arranging the available information in some logical order, prior to doing any writing or dictating, is advisable. For interview data, this may mean making an outline to assist in organizing the information into sections. The specific organization of those sections may vary from case to case but will be more readable if it is generally divided into distinct paragraphs. The following outline presents an example of how this could be done: • Current symptoms ||Cognitive ||Emotional/psychological ||Physical • Functional status ||Basic activities of daily living (if applicable) ||Instrumental activities of daily living (if applicable) ||Work/school performance • History ||Medical/neurological ||Psychosocial ||Developmental Only the information that is pertinent to the condition of interest should be detailed. For example, one would not typically need to report on basic activities of daily living in a case of learning disability but would in a case of moderate dementia. For the test results sections, it is useful to make a summary sheet of the test data and to place all documents in the file in the same order, to avoid

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having to thumb through it several times to find things. Another helpful heuristic can be to draw a diagram with the key message(s) of the report at the center and then decide what key elements of the history, test results, or other variables must be emphasized to provide the supporting foundation for that message. “Those “building blocks” can be drawn on one side of the key message(s), and the conclusions that logically flow from that on the other side. Figure 1.1 exemplifies this approach.

Technical Aspects of Report Preparation An effective neuropsychological report communicates relevant information in an evidence-­based, orderly, and clear manner that is appropriate for the target audience. Of course, one can never predict who else might end up reading the report, so striving toward professional objectivity and accountability is always a good idea. We also value parsimony, but the length of a report can vary with the complexity of the case and/or the practice setting. Regardless of length, the report must address the referral question and pre­ sent novel ideas and recommendations in a logical sequence, with smooth transitions between topics and wording that is easy to understand—­even to

Supporting Arguments 1.  There is mild left neglect and some but incomplete deficit awareness. 2.  Does well on Wisconsin Cards, suggesting that he is able to learn new strategies. 3.  Increased anxiety alone would not cause selective fine motor impairment of the left side of the body. ↓ Key Messages He had premorbid problems with anxiety but now has additional cognitive and motor problems as the result of his stroke. He can benefit from outpatient rehabilitation. ↓ Main Recommendations 1.  Stay on BuSpar but add outpatient psychotherapy as anxiety has worsened in reaction to stroke. 2.  Occupational therapy to work on motor impairment, awareness of left side, and activities of daily living. 3.  No driving at this time; may need driver evaluation down the line.

FIGURE 1.1.  Sample diagram for neuropsychological report organization prior to its initiation.



General Principles 7

a non-­neuropsychologist. Lichtenberger, Mather, Kaufman, and Kaufman (2004) provide detailed examples of technical aspects such as sentence length and paragraph organization, as well as the basics of grammar, punctuation, and capitalization that are all worthy of consideration. In general, it is advisable to: • Write short but complete sentences. • Present one main idea per paragraph, with a few supporting sentences. • Use the last sentence of the paragraph to transition into the next one. • Avoid passive voice. • Refrain from switching back and forth between past and present tense. • Integrate findings from an earlier section of the report into a later one, but not to do it vice versa. Specific to clinical neuropsychological reports, a few issues deserve further attention. Many such reports go into minute detail about information that may not be relevant or necessary. Concise but accurate communication is often more persuasive and less prone to misinterpretation. For example, instead of belaboring every single developmental milestone, from initial Apgar score to potty training success, it may sometimes be more appropriate to say: John’s early developmental history had been entirely unremarkable until he had the bout of bacterial meningitis at the age of 30 months.

Neuropsychologists also tend to use jargon in reports that they would most likely never use in their daily life. There is no reason to talk about suicidal “ideation” where the term “thoughts” would clearly suffice. Similarly, why does anybody have to refer to the patient’s right arm as the “dominant upper extremity”? Admittedly, sometimes it can be helpful or even necessary to use certain technical terms to address a specific issue, but then it would behoove the clinician to include either a brief explanation or an example that also refers to the implication of the finding. For example, rather than just stating that the “patient had many perseverations on the Wisconsin Card Sorting Test,” it might be helpful to elaborate by saying: This means that he kept making the same mistake over and over again, even when given feedback that he was doing it wrong. This reflects that he has problems with adjusting to changing task demands, and that he is not likely to learn independently from his mistakes.

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Another common mistake is making extensive use of ambiguous terms or qualifiers. Wording such as “It appears possible” or “I believe that it could” convey hesitancy or uncertainty. In addition, vague descriptions of behaviors or test results such as “a little bit” or subjective statements such as “pretty intelligent” do not convey a clear message. In medicolegal depositions, one is often asked whether something can be stated with “a reasonable degree of scientific certainty.” It is typically a good idea to write factual statements and diagnostic impressions with that framework in mind, even in a clinical context. That does not mean that the neuropsychologist has to go above and beyond his or her comfort level. It is perfectly legitimate to acknowledge that the data do not allow for a specific conclusion about a particular topic. However, it is not legitimate to ignore the issue, let alone to fail to make a clear attempt at addressing the referral question.

Ethical and Professional Issues The content of any clinical neuropsychological report needs to be evidence-­ based. The APA ethics code, specifically standards 2.04 and 9.01a, prohibits clinicians from including in such a report conclusions or recommendations that cannot be substantiated by the information obtained during the course of the evaluation and/or by the current state of the scientific knowledge base. Thus, a report that does not clearly identify any deficits in academic achievement or other cognitive domains should not result in a recommendation for special education support under the learning disability qualification. Evidence-­based practice requires not only the use of assessment instruments that are appropriate for the presenting problem and that (whenever possible) have known reliability and validity for use with that particular patient population, but also appreciation of research findings regarding the utility or obsolescence of those instruments, as detailed in standard 9.02a–c of the APA ethics code. Thus, a clinician who is still making in the report detailed interpretations of the “semantic clustering” score of the original California Verbal Learning Test in the evaluation of a person with TBI is likely on very shaky ground. Such practice would ignore the significant changes that were made to that test, and to that variable in particular, during the revision process (Stricker, Brown, Wixted, Baldo, & Delis, 2002) and the knowledge base that has accumulated about the validity of that revision in persons with TBI since then (DeJong & Donders, 2009; Jacobs & Donders, 2007). It is important that the content of a report maintain a professional and respectful tone. This requirement is particularly important in the case of independent educational or medicolegal evaluations, where it is not unusual to have been retained by one “side” in a dispute. The written report is not the place to get into a shouting match with another professional.



General Principles 9

Disagreements about procedures or diagnoses should be described in objective terms, supported by facts, and, as much as possible, devoid of grandstanding or other emotional overtones. The content of a report must also minimize intrusions on privacy, consistent with both standard 4.04 of the APA ethics code and the Health Insurance Portability and Accountability Act (HIPAA). Thus, with an examinee who is HIV positive but completely asymptomatic, the clinician will need to consider if inclusion in the report of this kind of sensitive information is warranted. This also gets back to the issues of informed consent that were discussed previously. In addition, clinicians need to be aware of state laws that may be relevant in this regard. Sometimes, it can also be advisable for a report to refer to a private issue that reflects that the clinician has taken it into account, without going into unnecessary detail. For example, instead of belaboring all the who, how, and when of a patient’s past experience of sexual abuse, it may be more appropriate to mention in the report something like: Ms. Doe has a remote history of personal trauma, of which the details will not be disclosed here, but the potential relevance was considered in the context of the diagnostic conclusions.

The issue of whether or not to include specific test scores in a clinical neuropsychological report has been debated in the field for decades. On the one hand, it is important to maintain test security, consistent with standard 9.11 of the APA ethics code. Thus, giving detailed descriptions of the cutoff scores for a performance validity test or quoting multiple items from an intelligence test verbatim is ill advised. On the other hand, failure to provide sufficient information may make the report less useful to the consumer, as in the case of a report concerning an evaluation of a child with a learning disability that does not include any achievement test scores. A reasonable compromise may be to append a summary of the most important standardized scores, along with a caution that those scores should never be interpreted without consideration of the complete narrative report. Regardless of whether or not the clinician prefers to include scores in the report, it needs to be realized that, under HIPAA as well as the APA ethics code (specifically, standard 9.04a–b), patients or their guardians have a right to access their data or to formally release them to a third person. The only exceptions would be in the case of forensic and related procedures. In addition, some states have more restrictive laws about to whom raw test data can be released. Attix and colleagues (2007) provide more guidelines about the release of raw test data. Finally, it is important that clinicians maintain, transfer, and (when appropriate) dispose of records in a manner that protects the confidentiality

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of the patient, consistent with standard 6.02a–c of the APA ethics code. The APA recordkeeping guidelines also suggest that clinicians retain records on their examinees for 7 years after the last date of service delivery for adults, or until 3 years after a minor reaches the age of majority, whichever is later (APA, 2007).

ABCN Practice Sample Criteria The ABCN has specific criteria for reviewing neuropsychological reports that are part of practice samples during the process of board certification in clinical neuropsychology. These criteria can be downloaded from the ABCN website (www.theabcn.org). The ABCN periodically reviews and revises those criteria, so it is important to check the website for the most current version. However, a listing of the criteria that were current as of this writing and that are relevant to report content is offered here as they establish common and well-­established guidelines for clinical neuropsychological reports. In general, the ABCN expects that the report: • Identifies the referral source. • Includes a reasonable presentation of the history of the present illness that captures the context of the symptoms, illness, or dysfunction, with some coverage of relevant past history and background as appropriate. • Is based on an assessment that reflects a reasonably comprehensive approach that is sufficient to address the diagnostic and management issues inherent in the case, with adequate coverage of all relevant cognitive and psychological domains. • Includes data from correctly administered and scored tests that are accurately reported and clearly presented. • Offers interpretations of test data that are based on a reference group that is a reasonable match between the patient and the normative sample. • Demonstrates knowledge and integration of brain–­behavior relationships in a way that addresses the clinical question and meets the needs of the identified consumer. • Results in conclusions that are supported by the data and reflect current standards of neuropsychological practice. • Identifies relevant historical and medical risk factors that inform the diagnostic formulation and recommendations. • Offers reasonable treatment recommendations that may include suggestions for further diagnostic work-up, therapeutic interventions, psychosocial adaptations, and other follow-­up.



General Principles 11

• Provides sufficient detail to foster implementation of recommendations. • Incorporates emotional and psychopathological factors. • Reflects that any relevant individual and cultural diversity issues were taken into account in test selection, normative references group used, and case formulation. • Identifies any legal/ethical issues raised in the evaluation, along with appropriate documentation of their management. • Documents any appropriate consultations with other professionals, as well as recommended referrals for other consults. • Is written, in its entirety, in a clear, professional style that is tailored to the background and needs of the identified primary consumer. The ABCN does not specify how applicants for board certification should address these issues. The guidelines just indicate that they should be attentive to all of them and, if relevant, address them in some responsible and professional way in the report. We would like to make a few additional comments of our own with regard to these ABCN guidelines. We offer these observations with the intent of further amplification. However, it should be clear that the following recommendations are our own and not necessarily those of the ABCN. Every report should identify the referral source. The reader needs to know if the referral came from a physician, an attorney, or another person. This also means that the reason for the referral, and any specific questions that the referring agent had, should be made explicit. There is no need to regurgitate the entire cover letter that may have accompanied the referral, but the key element(s) should be specified. For example, “Differentiate between normal aging, depression and early dementia” would make the purpose of the evaluation very clear. The degree of detail included in the report with regard to the history of the present illness, the relevant past medical and psychosocial history, and any risk factors for suboptimal outcomes may vary with the complexity of the case as well as the age of the examinee. For example, if there is a question about differential diagnosis in a dementia work-up, with consideration of Lewy body pathology, then some discussion of hallmark symptoms such as fluctuating cognition, parkinsonism, rapid-eye-­movement (REM) sleep behavior disorder, and visual hallucinations would be appropriate, along with a discussion of the time of onset and progression of both motor and cognitive symptoms. In contrast, not all of these issues would be expected to be reported routinely in a case of acute left hemisphere stroke with resultant global aphasia and right hemiparesis. As another example, a brief but sufficiently detailed review of prenatal, perinatal, and early developmental history would be expected in the case of the evaluation of a preschooler

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with a history of cerebral palsy, but this would not typically be the case with a middle-­aged adult with recent onset of vasculitis. There is no single “correct” answer to what tests or batteries should be included in a neuropsychological evaluation. In addition, their choice does not have to be elaborated in the report, unless there are specific reasons for deviating from accepted standards in the field. For example, consensus guidelines have been developed (Benedict et al., 2002) and validated (Benedict et al., 2006) for the evaluation of patients with multiple sclerosis. If the examiner deviated very significantly from those guidelines, it might be helpful to document in the report why he or she did that. Similarly, in an evaluation of a child with severe TBI where the Wechsler Intelligence Scale for Children—­ Fourth Edition (WISC-IV) was administered, one would typically expect to see documentation of the Processing Speed index because that happens to be the one that is most sensitive to such injury (Donders & Janke, 2008). However, if the neuropsychologist explained in the report that subtests comprising that index were omitted because of a comminuted fracture of the forearm used for writing, that would clarify things for the reader. Whatever battery of tests is eventually chosen, the report must show that the assessment was sufficiently comprehensive, with adequate coverage of various cognitive, behavioral, and emotional issues, to address the referral question and the associated diagnostic and follow-­up issues. Neuropsychologists differ significantly in their presentation of test results. Regardless of stylistic differences, the test interpretation should be readable, integrating the findings in a well-­organized fashion, as opposed to simply listing test descriptions and scores. Some clinicians prefer to divide the test results into sections according to neurocognitive domain (e.g., separate headings for “Attention,” “Language skills,” etc.). Others may organize the report according to the most salient findings, given the condition that is being assessed. For example, when ruling out mild cognitive impairment, the neuropsychologist might want to focus on findings that are most relevant to that condition, including memory and executive test results, as well as information about the instrumental activities of daily living. Regardless of the manner in which the test results are presented, we encourage description of the patient’s relative strengths and assets, not just weaknesses or deficits. This assists in the development of recommendations and of compensatory rehabilitation strategies. Neuropsychological reports must include a diagnostic formulation. The report should present a section in which the practitioner succinctly “ties the data together” and makes differential diagnoses. The neuropsychologist should not just regurgitate the details of the more extended prior test results section, but should instead summarize and highlight the most relevant interview and test findings supporting the suspected diagnosis and



General Principles 13

the associated recommendations for managing the condition or guiding rehabilitation. The nature, purpose, and outcomes of consultations with other professionals should also be documented in the report. These may include not only referrals for other consults but also explanations of the involvement of a technician or trainee, as well as interactions with other providers that may have shaped the decision-­making process. For example, on one occasion, we had to see a patient who was congenitally deaf and then in midadulthood experienced a stroke that affected her ability to use her hands for sign language. We were able to find a local provider who was fluent in sign language but did not feel comfortable dealing with the impact of a neurological disorder, particularly because it was not clear if the patient also had lost some of her ability to read lips. We then consulted with a neuropsychologist out of state who had considerable experience with this population. This made a significant impact on our test selection and interpretation. All of these issues were clearly documented in the report, along with a caution that the unusual complexity of the case necessitated a conservative interpretation of the findings. Some reports may necessitate the documentation of specific diversity, ethical, and/or legal issues. For example, there is general consensus in the field that it is preferable for patients to be evaluated by a neuropsychologist who is fluent in their language and knows their culture. However, such a person cannot always be found locally. If the neuropsychologist used an interpreter in such a case, it would be expected that the report documented the competency of the interpreter as well as any limitations use of an interpreter placed on the data interpretation. This would also be consistent with standards 2.05 and 9.03a–c of the APA ethics code. Ethical issues can range from sharing raw data with nonpsychologists to concerns about incompetence about another provider of neuropsychological services. Legal issues may range from concern about the validity of a patient’s request to amend his or her records to the mandated reporting in a case of suspected child abuse. If any such issues came up during the evaluation, prior to report preparation, the neuropsychologist’s report must state factually what decision was made and why, without necessarily disclosing all the minute details. When in doubt, consultation of legal counsel may be advisable.

Lifespan Issues The content of a report on a young child is likely to differ in some important ways from a report on an older person. For sake of convenience, this section uses TBI as a common example.

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The age of the examinee affects documentation of the interview and observations. For example, there is no point in asking a traumatically injured toddler about his or her prior alcohol abuse, but that child might have been exposed to substances in utero. With children, this issue can be addressed through a combination of records review and parent/guardian interview. In contrast, information about prenatal history might not be reliably obtainable in a geriatric population. The flattened philtrum that can be suggestive of a fetal alcohol spectrum disorder would also be more easily observed in a young child than in an adult with abundant facial hair. At the same time, documentation of the examinee’s self-­reported substance use history would be important in the evaluation of an adult because such abuse can be both a risk factor for TBI and a symptom of poor adjustment afterward (Horner et al., 2005). The most common comorbidities that must be considered in the report will also vary across the lifespan. For example, when evaluating a school-­ age child with mild TBI, learning disability and attention-­deficit/hyperactivity disorder are some of the most common premorbid complicating factors (which highlights the necessity of documenting a review of academic records). In contrast, when evaluating an older adult, there are more worries about issues such as diabetes mellitus, hypertension, and/or polypharmacy (Donders, 2010). In some special populations, such as veterans of the wars in Iraq or Afghanistan, careful consideration of posttraumatic stress disorder needs to be documented (Vanderploeg, Belanger, & Brenner, 2013). Failure to address potentially confounding premorbid or comorbid factors will lessen the value of many a clinical neuropsychological report. Lifespan issues also affect how a report addresses the impact of a specific event or condition. For example, in the case of a severe TBI in a high school senior, the clinician will likely need to address in the report issues such as eligibility for special education services and/or the potential need for a legal guardian when the examinee turns 18. In contrast, in the case of an older person who is developing dementia at a relatively early age, the clinician should document whether the examinee ever had a severe TBI; such an injury could have contributed to the earlier or accelerated development of the dementia in a predisposed individual (Starkstein & Jorge, 2005). Finally, lifespan considerations also affect statements in the report about prognostic issues. For example, much is known about the nature and trajectory of recovery of cognition after moderate to severe TBI during the first year after injury in adults (Christensen et al., 2008), but less information is available about trajectories of specific cognitive functions after that. The situation is more complicated with pediatrics, where there is not only an immature brain to consider but also the strong influence of family environment (Ryan et al., 2014). In general, the clinician must be careful in the report to make only prognostic statements that can actually be supported by the available data, and not engage in speculation. In addition, clinicians



General Principles 15

need to be aware that risk factors are always relative, based on group data, and do not necessarily apply to each and every individual. For example, incurring severe TBI during earlier phases of childhood is associated with a relatively lower likelihood of driving independently and of functioning as one’s own legal guardian during early adulthood (Donders & Warschausky, 2007). However, that does not mean that every preschooler with a severe TBI will need a guardian and third-party transportation after turning 18. Thus, when evaluating that child at the age of 6 years, the clinician should avoid statements in the report such as that the patient will “never” be able to function independently. It would be more appropriate to stress the need for long-term follow-­up.

Psychometric and Interpretive Issues In analyzing a large set of test results, it is important that the clinician have a good understanding of psychometric variables and how they affect interpretation of test results (for thorough reviews, see Adams & Waldron-­ Perrine, 2014; Brooks & Iverson, 2012; Donders, 2012; Schoenberg, Scott, Rinehardt, & Mattingly, 2014). Yet, many clinical neuropsychological reports do not clearly reflect awareness and integration of such variables. We discuss here some of the most common errors that we have encountered over the years in this regard. Clinicians need to pay careful attention to how they define impairment or what constitutes a low score. Setting the bar relatively stringent (e.g., more than two standard deviations below the mean) will reduce false positives but increase false negatives. Using a more liberal criterion (e.g., one standard deviation below the mean) will have the opposite effect. Whatever standard the clinician uses, it is important that this choice be made with consideration of whether it is more important to avoid a false negative or a false-­positive error, and that decision will not be uniform across practice settings. For example, in a conventional neurological practice, most clinicians will want to avoid missing any emerging impairment in a person with a family of Huntington’s disease. In contrast, in a criminal forensic setting, the neuropsychologist will want to avoid making an error that might help convict an innocent person. Whatever the standard that the clinician uses for impairment, it is important that he or she apply that standard consistently when dealing with similar cases. For example, in a personal injury context, it would not be proper to use a more stringent criterion when evaluating a person for the defense attorney than for the plaintiff’s attorney. One of the most common mistakes that we have encountered across neuropsychological reports pertains to overinterpretation of minor and common fluctuations in the data. Examples include equating a “statistically significant” (p < .05) discrepancy between two individual standard scores

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on the Wechsler Adult Intelligence Scale—­Fourth Edition (WAIS-IV) with clinical significance, or the assumption that even a single subtest score that is more than a standard deviation below the mean is unusual. Despite common lore, scatter or variability is not an indication of brain damage. Test score variability and having at least one or more “low” scores are normal in healthy individuals, both with children (Brooks, Iverson, Sherman, & Holdnack, 2009; Brooks, Sherman, & Iverson, 2010) and adults (Binder, Iverson, & Brooks, 2009; Schretlen, Testa, Winicki, Pearlson, & Gordon (2008). The more tests one administers and the more individual comparisons one makes between test scores, the more likely that at least one of them will appear indicative of a problem, where none may exist. A multivariate approach that takes into account base rates of low scores and contrasts is strongly recommended. An example is the algorithm developed by John Crawford for interpretation of score discrepancies on the WISC-IV, which is freely accessible on the Internet (http://homepages.abdn.ac.uk/j. crawford/pages/dept/psychom.htm). Another common mistake pertains to superficial equation of isolated test scores with a specific syndrome. Just because a sixth grader with a recent uncomplicated mild TBI has a poor score on a test of written arithmetic does not necessarily mean that this child now has a nonverbal learning disability. However, if that child also has an unusually low standard score on Perceptual Reasoning, in combination with selective fine motor impairment with the left hand and deficits in interpersonal pragmatics on standardized rating scales from several independent sources, that would lend more credence to such a diagnosis. Review of school records that reflect a precarious drop in math achievement during the fourth and fifth grades would also suggest that this condition was longstanding and not caused by the uncomplicated mild TBI. This reflects the importance of describing in the report how various findings converge to support a specific diagnostic conclusion. A related mistake is the tendency to take reported symptoms for granted and assume that they reflect a particular condition. For example, many persons who have recently sustained a mild TBI may report headaches, but that does not mean that they necessarily have significant, let alone permanent, cerebral dysfunction. An important consideration is that headache has a considerable base rate in the general population (Smitherman, Burch, Sheikh, & Loder, 2013). Similarly, although it may be tempting in light of sensationalized media coverage to attribute a suicide attempt to presumed chronic traumatic encephalopathy after a history of uncomplicated mild TBI, the current state of the scientific literature does not clearly support such an interpretation (Iverson, 2014; Wortzel, Shura, & Brenner, 2013). It is important for neuropsychological reports to be soundly grounded in empirical evidence, with proper consideration of base rates and other psychometric issues, and a demonstrated awareness of the current state of the literature on the condition of interest.



General Principles 17

Case Example To illustrate some of the less and more desirable ways of presenting information in a report, let us consider the case of Jane, a 9-year-old, right-­ handed, Caucasian girl who is living with her biological parents and two younger brothers. She had a surgical resection of a left frontal arteriovenous malformation 6 weeks earlier, which was initially discovered during a work-up for a single tonic–­clonic seizure that she had experienced 10 days prior to that. Her postoperative course has been unremarkable. At 1-month postsurgery, there was no seizure activity on electroencephalogram (EEG) and no residual edema on magnetic resonance imagery (MRI). She has completed outpatient rehabilitation therapies. The current evaluation was requested to assist with school reentry. The psychometric data are presented in Table 1.1. We first contrast different ways of presenting parts of the history, observations, test results, and recommendations. Finally, we show how the more desirable descriptions can be integrated into a complete report.

Example 1: Interview Less Desirable: Doctor A Jane was born at approximately 7 pounds after a pregnancy during which mother remained fairly active, did not smoke, and did not consume alcohol. There was no respiratory distress during or after birth, and she never had febrile seizures. She sat up by 6 months, demonstrated mild stranger anxiety by 9 months, walked on her own by 10 months, said her first recognizable words before she was 12 months old, and was putting words together in sentences when she was 18 months old. Jane has never had a surgery or other serious neurological injury before. She has also never been exposed to any personal trauma and does not have a history of behavioral problems. Jane has had no more tonic–­ clonic seizures since her surgery, even though the mother has not been giving her the anti­ seizure medication anymore because Jane complained that it always gave her a very unpleasant taste in her mouth. She has had that taste experience only a few times since the medication was discontinued. More Desirable: Doctor B The mother described a fairly unremarkable pregnancy, delivery, and neonatal period with Jane. She attained all

TABLE 1.1.  Neuropsychological Test Scores for Jane Test variable

Test result

Test of Memory Malingering Trial 1, raw score

50 (100% correct)

WISC-IVa

Verbal Comprehension Perceptual Reasoning Working Memory Processing Speed

79 96 90 84

KTEA-II a Reading Comprehension Math Computation

94 92

WCST-64a Perseverative Errors Nonperseverative Errors Categories Completed, raw score

94 90   3 (> 16th %ile)

CPT-II b Omissions Commissions Reaction Time Variability

66 42 60 68

WRAML-II c Story Memory, immediate recall Story Memory, delayed recall Story Memory, delayed recognition Picture Memory, immediate recall Picture Memory, delayed recognition

 9  8  8 10 11

NEPSY-II c Comprehension of Instructions Speeded Naming Affect Recognition Geometric Puzzles

10  6 11 11

Trail Making Test, Part A d

31 sec, z = –1.06

Bd

93 sec, z = –2.21

Trail Making Test, Part Grooved Pegboard Right hand d Left hand d

98 sec, z = –1.60 82 sec, z = –0.13

CBCb Internalizing Externalizing

54 42

Note. WISC-IV, Wechsler Intelligence Scale for Children—Fourth Edition; KTEA-II, Kaufman Test of Educational Achievement—Second Edition; WCST-64, Wisconsin Card Sorting Test (one-deck version); CPT-II, Conners’ Continuous Performance Test—­ Second Edition; WRAML-II, Wide Range Assessment of Memory and Learning—­ Second Edition; NEPSY-II, NEPSY—Second Edition; CBC, Child Behavior Checklist. a Standard score (M = 100, SD = 15; higher scores reflect better performance). bT-score (M = 50, SD = 10; higher scores reflect worse performance). c Scaled score (M = 10, SD = 3; higher scores reflect better performance). d Higher raw scores and lower z-scores (M = 0, SD = 1) reflect worse performance.

18



General Principles 19 developmental milestones at normal intervals. Essentially, her medical and psychosocial histories were unremarkable until she had her seizure. The mother discontinued Jane’s medication (Dilantin) 10 days ago because Jane was complaining that it gave her a bad taste in her mouth. However, the mother has not discussed this with the neurologist. I should also note that Jane reported that she had two more episodes within the past week of about 10 to 20 seconds of a vomit-like taste in her mouth. This raises concerns about continued epileptiform activity.

Comment on Interview Dr. A’s narrative is technically correct but problematic because it goes into minute details of the patient’s premorbid history but gives short shrift to some crucial information. Instead, Dr. B sums up the history much more succinctly and informs the reader of the fact that the mother has not cleared the medication cessation with the prescribing neurologist. Furthermore, Dr. B’s documentation appropriately reflects the likelihood that this child may still be experiencing auras or other seizure phenomena instead of merely reporting what was said.

Example 2: Observations Less Desirable: Doctor A Jane was dressed in jeans and a sweatshirt, wearing a headband around her head and sneakers on her feet. She was friendly and appeared to have a good sense of humor. Her interactions with her mother appeared to show a good mutual bond. In her spontaneous verbal expressions, she seemed to have some difficulties coming up with the right words. She did not demonstrate phonemic or semantic paraphasias or neologisms or circumlocutions. Prosody was not impaired, and the associated affect was not incongruent. She was able to follow two- and three-step verbal commands without apparent difficulty. Neglect of the right side of space was not observed. Symptoms of right hemiparesis were also not observed. It appeared that she was doing her best during the evaluation. More Desirable: Doctor B Jane was appropriately dressed and groomed. Her affect and demeanor were appropriate to the situation. She spoke coherently at all times, but some subtle word-­ finding

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difficulties were noted. Nevertheless, she was able to express a wide range of ideas, and there were no problems with her comprehension. I did not note any clearly unusual sensory or motor signs on general observation. I also did not observe any seizure activity during this evaluation. Jane’s effort was good on all tasks that were presented to her, yielding valid results.

Comment on Observations Dr. A may be technically correct about the description of Jane’s language. However, in a report on a school-­age child that will likely be read by school professionals, it is not very helpful to only use a plethora of technical terms. Instead, Dr. B simply describes the verbal expression issues in a language that most readers will be able to understand. Dr. A’s frequent use of phrases like “seemed” and “appeared” also does not convey as clear a message as Dr. B’s factual statements. Similarly, Dr. A’s tendency to state things in negative terms (e.g., “not incongruent”) may confuse the reader, whereas the active phrasing of Dr. B is more useful.

Example 3: Results Less Desirable: Doctor A Jane’s levels of psychometric intelligence range from borderline to average on the WISC-IV, in a pattern that fits with the left-­ hemisphere location of her arteriovenous malformation. This is reflected in the fact that the Perceptual Reasoning index is more than a standard deviation better than her Verbal Comprehension index, which is a statistically significant difference (p < 05). Her academic achievement in the areas of reading comprehension and written arithmetic on the KTEA-II is within normal limits. The fact that comprehension is good suggests that posterior left-­ hemisphere regions have been spared. She demonstrates intact executive skills on the WCST-64, which is remarkable in light of her frontal lobe injury. She is inattentive on the CPT-II. Memory is intact on the WRAMLII. The NEPSY-II shows problems with language but not with visual perception. This is an important strength. Trail Making A is mildly impaired, and Trail Making B, which is the most sensitive to brain damage, is moderately impaired. The Grooved Pegboard confirms that she is doing worse with her right hand. This is the result of left frontal involvement as the result of her brain lesion. Thus, there is no doubt that Jane has brain damage.



General Principles 21 More Desirable: Doctor B Jane demonstrates mild impairment (i.e., doing worse than 90% of her peers) in two areas: verbal expression and complex attention. She has difficulty on tasks where she has to provide elaborate verbal answers (WISC-IV Verbal Comprehension) or when she has to talk under time pressure (NEPSY-II Speeded Naming). This difficulty is also associated with selective impairment of fine motor coordination with the right hand (GPEG), all of which fits with her known left anterior brain lesion. In contrast, she does well on tests where she can work with visual or tangible materials. In fact, when she does not have to use language, she can consider different approaches to a task and adjust to changing task demands (WCST–64). Jane also has difficulties with complex attention. When she has to stay focused for an extended period of time, her attention starts to wax and wane, and she starts missing things (CPT-II). In addition, she has difficulties with shifting and dividing her attention when she has to keep more than one thing in mind at the same time (TMT, part B).

Comment on Results On the one hand, Dr. A makes the common mistake of making the report a “laundry list” of individual test findings, without any clear integration of the different components. Dr. B, on the other hand, starts off with identifying two distinct problems, discusses those separately, and pulls information from various tests together to make a concerted point. In addition, Dr. B explains more clearly how this girl functions relatively best, as opposed to focusing primarily on the deficits. Finally, Dr. B briefly mentions the fact that the findings “fit” with what is already known about the cerebral lesion, whereas Dr. A spends too much time talking about the lesion in a way that really does not tell the reader much that is new.

Example 4: Recommendations Less Desirable: Doctor A 1. Jane needs special education support because of her brain injury. Visual support materials need to be used extensively. 2. Jane has problems with attention, but her mother is worried about the use of stimulant medication in light of her seizure history. It might be best to focus instead on

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environmental modifications (e.g., quiet study environment) instead of treating this with medication. More Desirable: Doctor B 1. Several strategies can be used in the classroom to facilitate Jane’s learning. As much as possible, tasks should be made interactive, with frequent review and feedback. In addition, a hands-on approach with visual or tangible materials, preferably with a clear and concrete model, is helpful. 2. A trial of pharmacological intervention with regard to managing the difficulties with attention may be considered. However, it needs to be kept in mind that the mother (a) already discontinued Jane’s Dilantin and (b) has concerns about lowering seizure threshold with traditional stimulant medications. Thus, she really needs to talk to the neurologist about all this.

Comment about Recommendations Dr. A’s recommendation to use visual support materials is too vague, whereas Dr. B uses more of the assessment information to give specific suggestions about how this girl learns relatively best. Dr. A inappropriately takes at face value the mother’s concern about seizure risk, whereas Dr. B makes it clear that decisions about medication are up to the physician, and that those decisions should also take into account that this child has been going for more than a week without her prescribed antiseizure agent. As the rest of this volume will reflect, there is no single “right” way to prepare a clinical neuropsychological report that will work with all cases and in all practice settings. However, for illustrative purposes, Dr. B’s entire report is included in Appendix 1.1 (pp. 26–29). The next chapters discuss the unique demands, challenges, and opportunities pertaining to clinical neuropsychological report preparation in different settings and with various clientele. References Adams, K. M., & Waldron-­Perrine, B. (2014). Psychometrics, test design, and essential statistics. In K. J. Stucky, M. W. Kirkwood, & J. Donders (Eds.), Neuropsychology study guide and board review (pp. 79–96). New York: Oxford University Press. American Psychological Association. (2002). Ethical principles of psychologists and code of conduct. American Psychologist, 57, 1060–1073.



General Principles 23

American Psychological Association. (2007). Record keeping guidelines. American Psychologist, 62, 993–1004. Attix, D. K., Donders, J., Johnson-­Greene, D., Grote, C. L., Harris, J. G., & Bauer, R. M. (2007). Disclosure of neuropsychological test data: Official position of Division 40 (Clinical Neuropsychology) of the American Psychological Association, Association of Postdoctoral Programs in Clinical Neuropsychology, and American Academy of Clinical Neuropsychology. The Clinical Neuropsychologist, 21, 232–238. Axelrod, B. N. (2000). Neuropsychological report writing. In R. D. Vanderploeg (Ed.), Clinician’s guide to neuropsychological assessment (2nd ed., pp. 245– 273). Mahwah, NJ: Erlbaum. Baron, I. S. (2004). Neuropsychological evaluation of the child. New York: Oxford University Press. Benedict, R. H. B., Cookfair, D., Gavett, R., Gunther, M., Munschauer, F., Garg, N., et al. (2006). Validity of the minimal assessment of cognitive function in multiple sclerosis (MACFIMS). Journal of the International Neuropsychological Society, 12, 549–558. Benedict, R. H. B., Fischer, J. S., Archibald, C. J., Arnett, P. A., Beatty, W. W., Bobholz, J., et al (2002). Minimal neuropsychological assessment of MS patients: A consensus approach. The Clinical Neuropsychologist, 16, 381–397. Binder, L. M., Iverson, G. L., & Brooks, B. L. (2009). To err is human: “Abnormal” neuropsychological scores and variability are common in healthy adults. Archives of Clinical Neuropsychology, 24, 31–46. Boone, K. B., Victor, T. L., Wen, J., Razani, J., & Pontón, M. (2007). The association between neuropsychological scores and ethnicity, language, and acculturation variables in a large patient population. Archives of Clinical Neuropsychology, 22, 355–365. Brooks, B. L., & Iverson, G. L. (2012). Improving accuracy when identifying cognitive impairment in pediatric neuropsychological assessments. In E. M. S. Sherman & B. L. Brooks (Eds.), Pediatric forensic neuropsychology (pp. 66–88). New York: Oxford University Press. Brooks, B. L., Iverson, G. L., Sherman, E. M. S., & Holdnack, J. A. (2009). Healthy children and adolescents obtain some low scores across a battery of memory tests. Journal of the International Neuropsychological Society, 15, 613–617. Brooks, B. L., Sherman, E. M. S., & Iverson, G. L. (2010). Healthy children get some low scores too: Prevalence of low scores on the NEPSY-II in preschoolers, children, and adolescents. Archives of Clinical Neuropsychology, 25, 182–190. Bush, S. S., Ruff, R. M., Tröster, A. I., Barth, J. T., Koffler, S. P., Pliskin, N. H., et al. (2005). Symptom validity assessment: Practice issues and medical necessity NAN policy and planning committee. Archives of Clinical Neuropsychology, 20, 419–426. Christensen, B. K., Collella, B., Inness, E., Hebert, D., Monette, G., Bayley, M., et al. (2008). Recovery of cognitive function after traumatic brain injury: A multilevel modeling analysis of Canadian outcomes. Archives of Physical Medicine and Rehabilitation, 89, S3–S15. DeJong, J., & Donders, J. (2009). A confirmatory factor analysis of the California

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Verbal Learning Test—­S econd Edition (CVLT-II) in a traumatic brain injury sample. Assessment, 16, 328–336. Donders, J. (2001a). A survey of report writing by neuropsychologists: I. General characteristics and content. The Clinical Neuropsychologist, 15, 137–149. Donders, J. (2001b). A survey of report writing by neuropsychologists: II. Test data, report format, and document length. The Clinical Neuropsychologist, 15, 150–161. Donders, J. (2005). The clinical interview. In S. S. Bush & T. A. Martin (Eds.), Geriatric neuropsychology: Practice essentials (pp. 11–20). New York: Taylor & Francis. Donders, J. (2010). Traumatic brain injury across the lifespan: A long-term developmental perspective. In J. Donders & S. J. Hunter (Eds.), Principles and practice of lifespan developmental neuropsychology (pp. 357–358). Cambridge, UK: University Press. Donders, J. (2012). Interpretive confounds in the independent pediatric neuropsychological evaluation. In E. M. S. Sherman & B. L. Brooks (Eds.), Pediatric forensic neuropsychology (pp. 182–201). New York: Oxford University Press. Donders, J., Brooks, B. L., Sherman, E. M. S., & Kirkwood, M. W. (in press). Pediatric forensic neuropsychology. In J. E. Morgan & J. H. Ricker (Eds.), Textbook of clinical neuropsychology (2nd ed.). New York: Taylor & Francis. Donders, J., & Janke, K. (2008). Criterion validity of the Wechsler Intelligence Scale for Children—­Fourth Edition after pediatric traumatic brain injury. Journal of the International Neuropsychological Society, 14, 651–655. Donders, J., & Warschausky, S. (2007). Neurobehavioral outcomes after early versus late childhood traumatic brain injury. Journal of Head Trauma Rehabilitation, 22, 296–302. Glymour, M. M., & Manly, J. J. (2008). Lifecourse social conditions and racial and ethnic patterns of cognitive aging. Neuropsychology Review, 18, 223–254. Hannay, J., Bieliauskas, L., Crosson, B., Hammeke, T., Hamsher, K., & Koffler, S. (1998). Proceedings of the Houston Conference on specialty education and training in clinical neuropsychology. Archives of Clinical Neuropsychology, 13, 157–250. Heilbronner, R. L., Sweet, J. J., Morgan, J. E., Larrabee, G. J., & Millis, S. R. (2009). American Academy of Clinical Neuropsychology consensus conference statement on the neuropsychological assessment of effort, response bias, and malingering. The Clinical Neuropsychologist, 23, 1093–1129. Horner, M. D., Ferguson, P. L., Selassie, A. W., Labbate, L. A., Kniele, K., & Corrigan, J. D. (2005). Patterns of alcohol use 1 year after traumatic brain injury: A population-­based epidemiological study. Journal of the International Neuropsychological Society, 11, 322–330. Iverson, G. L. (2014). Chronic traumatic encephalopathy and risk of suicide in former athletes. British Journal of Sports Medicine, 48, 162–165. Jacobs, M. L., & Donders, J. (2007). Criterion validity of the California Verbal Learning Test–­S econd Edition (CVLT-II) after traumatic brain injury. Archives of Clinical Neuropsychology, 22, 143–149. Jasper, L. G., & Capuco, J. T. (2001). Gathering background data. In C. A. Armengol, E. Kaplan, & E. J. Moes (Eds.), The consumer-­oriented neuropsychological report (pp. 83–94). Lutz, FL: Psychological Assessment Resources.



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Lichtenberger, E. O., Mather, N., Kaufman, N. L., & Kaufman, A. S. (2004). Essentials of assessment report writing. New York: Wiley. Loring, D. W., & Bauer, R. M. (2010). Testing the limits: Cautions and concerns regarding the new Wechsler IQ and memory scales. Neurology, 74, 685–690. Ryan, N. P., Anderson, V., Godfrey, C., Beauchamp, M. H., Coleman, L., Eren, S., et al. (2014). Predictors of very-long-term sociocognitive function after pediatric traumatic brain injury: Evidence for the vulnerability of the immature “social brain.” Journal of Neurotrauma, 31, 649–657. Sbordone, R. J. (2000). The assessment interview in clinical neuropsychology. In G. Groth-­Marnat (Ed.), Neuropsychological assessment in clinical practice: A guide to test interpretation and integration (pp. 94–128). New York: Wiley. Schoenberg, M. R., Scott, J. G., Rinehardt, E., & Mattingly, M. (2014). Test administration, interpretation, and issues in assessment. In K. J. Stucky, M. W. Kirkwood, & J. Donders (Eds.), Neuropsychology study guide and board review (pp. 97–114). New York: Oxford University Press. Schretlen, D. J., Testa, S. M., Winicki, J. M., Pearlson, G. D., & Gordon, B. (2008). Frequency and bases of abnormal performance by healthy adults on neuropsychological testing. Journal of the International Neuropsychological Society, 14, 436–445. Smitherman, T. A., Burch, R., Sheikh, H., & Loder, E. (2013). The prevalence, impact, and treatment of migraine and severe headaches in the United States: A review of statistics from national surveillance studies. Headache, 53, 427– 436. Starkstein, S. E., & Jorge, R. (2005). Dementia after traumatic brain injury. International Psychogeriatrics, 17, S93–S107. Stricker, J. L., Brown, G. G., Wixted, J., Baldo, J. F., & Delis, D. C. (2002). New semantic and serial clustering indices for the California Verbal Learning Test—­Second Edition: Background, rationale, and formulae. Journal of the International Neuropsychological Society, 8, 425–435. Vanderploeg, R. D. (2000). Interview and testing: The data collection phase of neuropsychological evaluations. In R. D. Vanderploeg (Ed.), Clinician’s guide to clinical neuropsychological assessment (2nd ed., pp. 3–38). Mahwah, NJ: Erlbaum. Vanderploeg, R. D., Belanger, H. G., & Brenner, L. A. (2013). Blast injuries and PTSD: Lessons learned from the Iraqi and Afghanistan conflicts. In S. Koffler, J. Morgan, I. S. Baron, & M. F. Greiffenstein (Eds.), Neuropsychology: Science and practice I (pp. 114–148). New York: Oxford University Press. Williams, M. A., & Boll, T. J. (2000). Report writing in clinical neuropsychology. In G. Groth-­Marnat (Ed.), Neuropsychological assessment in clinical practice: A guide to test interpretation and integration (pp. 575–602). New York: Wiley. Wortzel, H. S., Shura, R. D., & Brenner, L. A. (2013). Chronic traumatic encephalopathy and suicide: A systematic review. BioMed Research International, 2013, 424280. Retrieved February 28, 2014, from http://dx.doi. org/10.1155/2013/424280.

Appendix 1.1

Sample Complete Neuropsychological Report for Jane Date of evaluation: 12/30/2014 Referred by: John Doe, MD (neurology) Referral question: Evaluate for sequelae of arteriovenous ­m alformation.

Background Information This is a 9-year-old, right-­ h anded, Caucasian girl who is currently living with her biological parents and two younger brothers. She had a surgical resection of a left frontal arteriovenous malformation (AVM) 6 weeks ago, which was initially discovered during a work-up for a single tonic–­ clonic seizure that she had experienced 10 days prior to that. The surgery was without complications, and her postoperative course has been unremarkable. EEG at 1-month postsurgery did not reveal any epileptiform activity, whereas her presurgery EEG had shown two brief episodes of spike–wave activity. MRI at the time of follow-­ up showed complete resolution of the mild edema that was initially noted, immediately postsurgery. She has completed a brief course of outpatient physical and speech rehabilitation therapies. The current evaluation was requested to assist with school reentry, as the next semester is about to start in 2 weeks. Academic records from elementary school showed that Jane was performing in the average range on standardized achievement tests prior to her seizure, and did not identify any behavioral or other concerns. I personally completed the records review, interview, test selection, data integration, feedback, and report preparation components of this evaluation (CPT Code 96118; two units). The majority of the face-to-face tests were administered and scored by my assistant (Jill Smith, MA), who is appropriately licensed to do so under my direction and supervision (CPT Code 96119; four units). There was no duplication of services or charges in this regard.

Interview Jane was brought to the evaluation by her mother, who provided informed consent for the assessment to proceed. Jane assented to it. She completed the formal testing in the absence of any third persons, consistent with standardization guidelines. Jane was in the third grade at the time of her seizure. She expressed eagerness to return to school. She denied pain, sleep disturbance, cognitive difficulties, or emotional distress. She

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General Principles 27

was able to identify several close friends who have stayed in contact with her. The mother described a fairly unremarkable pregnancy, delivery, and neonatal period with Jane. She attained all developmental milestones at normal intervals. Essentially, her medical and psychosocial histories were unremarkable until she had her seizure. The mother discontinued Jane’s medication (Dilantin) 10 days ago because Jane was complaining that it gave her a bad taste in her mouth. However, the mother has not discussed this with the neurologist. I should also note that Jane reported that she had two more episodes within the past week of about 10 to 20 seconds of a vomit-like taste in her mouth. This raises concerns about continued epileptiform activity. The mother did not have current behavioral or cognitive concerns about Jane. There have also been no recent unrelated psychosocial stressors. Family medical history is significant for hypertension on the maternal side and for diabetes mellitus on the paternal side.

Behavioral Observations Jane was appropriately dressed and groomed. Her affect and demeanor were appropriate to the situation. She spoke coherently at all times, but some subtle word-­ finding difficulties were noted. Nevertheless, she was able to express a wide range of ideas, and there were no problems with her comprehension. I did not note any clearly unusual sensory or motor signs on general observation. I also did not observe any seizure activity during this evaluation. Jane’s effort was good on all tasks that were presented to her, yielding valid results.

Test Results A summary of the formal psychometric data is attached. Rather than reviewing every single test or score in isolation, let me highlight the most significant findings. Academic skills that Jane had mastered prior to the surgery have been well preserved, with regard to both reading and math (KTEA-II). However, Jane demonstrates mild impairment (i.e., doing worse than 90% of her peers) in two areas: verbal expression and complex attention. She has difficulty on tasks where she has to provide elaborate verbal answers (WISC–IV Verbal Comprehension) or when she has to talk under time pressure (NEPSY-II Speeded Naming). This is also associated with selective impairment of fine motor coordination with the right hand (GPEG), all of which fits with her known left anterior brain

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lesion. In contrast, she does well on tests where she can work with visual or tangible materials. In fact, when she does not have to use language, she can consider different approaches to a task and adjust to changing task demands (WCST-64). Jane also has difficulties with complex attention. When she has to stay focused for an extended period of time, her attention starts to wax and wane, and she starts missing things (CPT-II). In addition, she has difficulties with shifting and dividing her attention when she has to keep more than one thing in mind at the same time (TMT, part B). Despite all this, she is still able to learn and remember new information when working one on one and with no distractions around (WRAML-II). I would have more significant concerns about her ability to do so in a larger and busier classroom. It should also be noted that the above-­ mentioned WCST–64, on which she did so well, is very interactive in nature, with frequent feedback and redirection. I anticipate that the problems with complex attention would affect Jane more when she has to independently keep track of her work over an extended period of time. Finally, the results from a standardized rating scale (CBC) that I had the mother complete with regard to Jane’s day-today functioning are not suggestive of a child who has pervasive internalized distress or who is just oppositional or defiant in nature. This fits with Jane’s self-­ report and her demeanor during the formal testing.

Impression/Recommendations This is a mildly but clinically significantly abnormal set of neuropsychological test results, with some findings that correlate with the known left frontal involvement. Jane has mild word-­ finding difficulties and some fine motor impairment on the right side of the body. I am relatively most concerned about her difficulties with divided and sustained attention. In this context, it is important that there was nothing in the school records to suggest premorbid difficulties with attention. Thus, these problems have clearly resulted from her recent neurological history. For this reason, I suggest that she be considered for eligibility for special education support under the qualification of Other Health Impairment. I do not see evidence for a complicating mood or adjustment disorder. With regard to her further care, I offer the following suggestions. 1. Several strategies can be used in the classroom to facilitate Jane’s learning. Avs much as possible, tasks should be made interactive, with frequent review and feedback. In addition, a hands-on approach with visual or tangible materials, preferably with a clear and concrete model, is helpful.



General Principles 29

2. A trial of pharmacological intervention with regard to managing the difficulties with attention may be considered. However, it needs to be kept in mind that the mother (a) already discontinued Jane’s Dilantin and (b) has concerns about lowering seizure threshold with traditional stimulant medications. Thus, she really needs to talk to the neurologist about all this. I prefer that such a discussion take place first, particularly in light of the fact that Jane may continue to have aura experiences. Second, although it is my understanding that the balance of the literature clearly suggests that agents such as Ritalin and Adderall are safe in children with a one-time symptomatic seizure, such a consideration is a medical decision and up to her attending physician. 3. Jane can also be encouraged to develop some self-­ monitoring techniques, especially for use with more prolonged tasks, to help compensate for the difficulties with complex attention. An example would be to “stop, look and think” at periodic intervals to make sure she is still on track. Again, the availability of a model or outline to follow would be helpful in this regard. In addition, she should be encouraged and reminded to routinely recheck her work for mistakes after completion. 4. Jane has already completed a course of outpatient speech therapy, but I would still caution against putting pressure on her to speak quickly, and instead give her ample time to express herself. In addition, it needs to be realized that she still has some fine motor impairment with her right hand, so she may need extended time for assignments that involve a lot of writing.

Follow-Up I have discussed these findings and recommendations with Jane’s mother in a preliminary manner. I would suggest a repeat comprehensive neuropsychological evaluation only on a PRN basis. A more limited reevaluation of attention skills (e.g., CPT-II combined with standardized rating forms from parents and teacher) could be considered a few weeks after the start of school and after initiation of treatment for the attention problems, if the treatment ends up being initiated. For any further questions, please do not hesitate to contact my office directly.

Chap ter 2

Neuropsychological Reports for School‑Age Children Kira Armstrong Shannon M. Lundy

T

he value of writing a “school-­friendly” neuropsychological report may be obvious in outpatient clinical settings, especially in private practices that specialize in developmental and learning disorders. However, every pediatric neuropsychologist who evaluates a school-­age child should recognize that, more often than not, their report will be presented to the child’s school for consideration. This is true regardless of the setting in which one practices, or whether the report is written primarily to answer specific medical questions. Although school-­related issues may not be overtly evident in the referral question, the educational consequences of a child’s medical disorder and/or associated treatment are often a critical matter that should be addressed (Loring, Hermann, & Cohen, 2010). Indeed, as children increasingly survive complex neurological and medical conditions, and as health care limitations further reduce rehabilitation interventions, even those children seen in medical settings with clear neuropathology will ultimately require academic services as part of their intervention planning (Ernst, Pelletier, & Simpson, 2008). With this in mind, this chapter is designed to provide clinicians with information regarding how to best write reports that support a child’s educational needs. Readers are encouraged to incorporate the components that best fit into their clinical practice model.

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Developmental Neuropsychological Considerations and the Assessment Process Pediatric neuropsychology evaluations occur in a wide range of settings and with an equally variable number of referral sources and questions. In some settings, a child may be referred to document neurocognitive functioning so as to direct medical interventions and services. In other settings, the neuropsychologist may be the first person consulted to document and explain a child’s cognitive, learning, social–­emotional, and/or behavioral difficulties. Finally, children may be referred for second opinions when prior medical and/or psychological consultations did not offer clear explanations for concerning behavior (Baron, 2004). To best serve this role, a pediatric neuropsychologist must integrate neurocognitive data, behavioral observations, and psychological processes, with an awareness of the developing brain and underlying etiology as well as the child’s unique context (i.e., his or her social, familial, cultural, developmental, and emotional history) (Bern­stein, 2000). The neuropsychological report then becomes a vehicle for communicating diagnostic formulations, predictions of future outcomes, and recommendations to all interested parties. For this reason, the report is most useful when clinicians are cognizant of the many potential readers (e.g., medical specialists, psychologists, parents, educators) who will ultimately review the report. In order to meet these expectations, the assessment process and report should include a thorough review of the child’s family/genetic history, as well as his or her developmental, medical, educational, and psychological history. This information should be collected through direct interviews and questionnaires, as well as through a review of relevant documents. Although original medical documents are not always available (especially for outpatient clinicians), they can be critical to confirm and/or clarify reports of prior diagnoses and medical interventions. Whether or not medical records are available, it is incumbent on the clinician to ascertain a clear medical history, without deferring to undocumented claims of previous diagnoses. This is especially important when children are referred due to a history of mild traumatic brain injury (mTBI) and/or concussion, as these diagnoses are often inaccurately given based solely on self- or parent report and then perpetuated in future medical assessments (Carone, 2013). It is also important to be knowledgeable about the child’s current and/or premorbid academic functioning. When collecting this information clinicians should be cognizant of the potential conflict between the beliefs of parents and school personnel regarding a child’s eligibility for special education services as well as any interventions or accommodations the child has received to date. Consequently, reasonable attempts should be made to obtain outside information, including teacher report (through

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informal and/or standardized inventories), report cards, and (when possible) classroom observations (Hurewitz & Kerr, 2011). Additionally, clinicians should routinely request documentation regarding previous school or “Team” assessments, Individualized Education Plans (IEPs), and/or 504 accommodation plans. Collecting information from the school as well as the family allows the clinician to directly advocate for the child’s needs rather than inadvertently being placed in a position to “take sides.” Finally, interviews with the child and his or her parent (rather than only one or the other) further provide more comprehensive information about the child’s presenting challenges. Obtaining relevant information from all three sources gives the evaluator a sense as to whether the child, parent(s), and/ or school personnel are seeing a similar or disparate set of challenges. This helps set the stage for how results should be presented during the feedback session and in the report. The specific cognitive areas assessed through an evaluation will vary to some degree depending on the clinical setting and referral question. In some instances, a targeted assessment and limited battery may adequately answer the child’s medically related questions. However, when more comprehensive assessments are administered, the battery should include measures that evaluate the child’s overall cognitive ability (IQ); expressive and receptive language skills; visual spatial skills; memory; attention; motor/ visual–­motor; and executive functions (e.g., planning, problem solving, cognitive flexibility, organization, inhibition, and working memory). Documentation of the child’s adaptive functioning (when relevant), psychological adjustment, and social–­emotional functioning are also critical components of pediatric neuropsychological assessments and can be completed through both formal measures and comprehensive diagnostic interviews. Finally, the neuropsychological community is increasingly asserting that testing batteries should include some form of embedded and/or separate performance validity tests (PVTs) and when relevant, symptom validity tests (SVTs) (Bush et al., 2005; Donders & Kirkwood, 2013; Blaskewitz, Merten, & Kathmann, 2008; Heilbronner et al., 2009). Although testing these domains will provide a solid understanding of the child’s cognitive abilities, documenting a child’s academic strengths and weaknesses is also critical for creating thoughtful recommendations that translate into the academic setting (Ernst et al., 2008). This is especially important for children whose medical conditions place them at known risk for learning delays and associated disabilities. Test selection should be designed not only to document academic-­ based deficits or relevant weaknesses, but also to allow the clinician to clearly explain the source of the child’s problems so as to best direct intervention services. This often requires an error analysis of the child’s performance rather than a strict interpretation of the scores alone. For example, a child whose math fluency score is impaired because he or she made a high number of impulsive/



Reports for School‑Age Children 33

inattentive errors would require different intervention than a child who completed every item correctly but worked at an especially slow pace.

Understanding Special Education Law and Eligibility Criteria In our clinical practice, we have seen many reports in which neuropsychologists have made recommendations (and even demands) that reflect a limited understanding of special education law and eligibility criteria. This deficit can lead to unnecessary conflict between the school, the child’s parents, and other service providers. It also reduces the likelihood that a neuropsychologist’s recommendations will be integrated into a child’s educational program. To avoid this situation, it is incumbent on the clinician to have a solid understanding of school administrative procedures, policies, and guidelines, as well as federal and state laws that govern special education services. It is equally important to understand the range of accommodations, modifications, and support that public schools are mandated to provide (Ernst et al., 2008), as well as what the schools do not need to offer. All children between the ages of 3 and 21 are entitled to a “free and appropriate public education” (FAPE) in the least restrictive environment (LRE) that allows them to access the curriculum and to make effective progress. There are two federal laws that document the rights of children with disabilities in an academic setting. The first of these is the Individuals with Disabilities Education Act (IDEA: Public Law 94-142). IDEA was written in 1975 and expanded upon in 1977 to ensure that all children with disabilities are (1) identified by a multidisciplinary school team and (2) provided with individually designed instruction in the LRE. IDEA includes 13 disability categories for special education services with defining criteria that can vary from state to state. IDEA was reauthorized in 2004 and is now referred to as the Individuals with Disabilities Education Improvement Act (IDEIA). The most relevant changes in IDEIA pertain to the determination of special education eligibility for specific learning disabilities (SLDs). With the implementation of this law, schools can no longer base SLD determinations solely on a severe discrepancy between intellectual ability and achievement (Fletcher, Coulter, Reschly, & Vaughn, 2004). The law does continue to allow for the use of a discrepancy model, but it also provides alternative qualification methods and encourages schools to consider the underlying psychological processing deficits contributing to an SLD. The federal laws associated with IDEA/IDEIA were designed as guiding principles establishing the “floor” of rights for students with special needs. Each state has varying interpretations of the law including what should not fall below that “floor,” as well as associated differences in the methodology and criteria to determine eligibility for an SLD. Additionally,

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even within a state, school districts may interpret and implement state laws very differently. As a result, policies across the country can vary significantly, and some of the qualification methods are not always intuitive for neuropsychologists. For example, to qualify for an SLD designation in Maine, a child must (among other criteria) “score ≥ 1.5 standard deviations below the mean in one area of psychological processing or ≥ 1 standard deviations below the mean in two areas of psychological processing (i.e., measures of memory, processing speed, or phonological processing)” (Ahearn, 2008, p. 6, emphasis added). Notably, counter to current neuropsychological constructs and research regarding learning disorders, this law does not mandate or even allow for a child’s performance on specific academic achievement tests (aside from measures of phonological processing) to determine eligibility. IDEIA also includes policy relating to response to intervention (RTI). RTI mandates the provision of tiered research-­ based interventions to improve a child’s skills in deficit areas (Fletcher et al., 2004; Ernst et al., 2008). A full review of RTI is beyond the scope of this chapter. However, it should be acknowledged that some school districts determine eligibility for SLD services based on the child’s performance in these increasing levels of interventions (or RTI) in addition to and/or instead of a child’s performance on standardized testing. This further demonstrates how imperative it is for clinicians to be aware of how these laws are applied within each state, so as to write reports that map onto relevant eligibility criteria. Finally, Section 504 of the Rehabilitation Act (1973) is the second federal law that defines services for students with disabilities. This law outlines a broader definition of the term disability and focuses on determining whether an individual’s disability substantially limits one or more major life activities. The law precludes recipients of federal funds from discriminating against qualified handicapped individuals. As most public schools receive federal funds, they are subject to withdrawal of this money if they engage in discriminatory practices against qualified handicapped individuals. The law, therefore, ensures that a child with a disability has equal access to a public education through the provision of accommodations and modifications. Children who are eligible for accommodations under this law are provided with a 504 Plan, whereas children who are eligible for specialized instruction and services under IDEA/IDEIA are provided with an IEP, which includes associated goals and special education interventions.

Determining Eligibility for Special Education Services: The Distinction between “Disorder” and “Disability” Public schools are mandated to provide children with documented disabilities an education that ensures effective progress. However, a medical



Reports for School‑Age Children 35

diagnosis is not sufficient to determine eligibility for special education services, even if the diagnosis is an SLD. Pediatric neuropsychologists should be aware of the distinction between the words “disorder” and “disability.” A “disorder” is a diagnosis made by a medical or behavioral health professional, whereas a “disability” is a legal term indicating that a child’s disorder is significantly limiting his or her ability to access the general education curriculum and make effective progress. Eligibility is determined by a student’s school “Team,” which includes multidisciplinary school personnel, parents, and any outside professionals attending the meeting. The school Team is expected to make decisions regarding eligibility and programming based on the child’s performance on testing (both within the school and on outside evaluations), as well as his or her daily academic performance. School Teams are mandated to consider any outside or “independent” evaluation, including neuropsychological assessments, but they are not required to accept the findings (including test results, diagnoses, and predictions for a child’s academic challenges); nor are they required to implement the recommendations. Consequently, a child can meet the criteria for a medical disorder, but still be found ineligible for accommodations through a 504 Plan or special education services through an IEP if the Team believes the disorder is not limiting the child’s ability to access the curriculum and make effective educational progress. When evaluating a child whose medical disorder and/or diagnoses are contributing to a significant disability, the report should clearly detail how the child’s cognitive profile will have an adverse impact on his or her academic development and performance. This documentation will be most meaningful if it is written in a way that maps onto specific state laws regarding disability designations and eligibility. This again requires an understanding of how the child’s disorder and associated disability is defined in a clinician’s region. For example, in some states and school districts an acquired brain injury (ABI) is subsumed under the “Other Health Impairment” (OHI) designation, whereas in other settings, children with ABIs receive services under a TBI designation.

Writing for and Collaborating with School Professionals In order to best understand how a neuropsychological report can support a child in the educational setting, it is first important to highlight how medically based evaluations differ from school-­based Team assessments. Each approach brings its own advantages and disadvantages. For example, although there are some exceptions, most pediatric neuropsychologists do not observe children in the classroom. Clinicians must therefore rely on secondary sources to build a comprehensive impression of the child’s

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day-to-day presentation, whereas school psychologists have the advantage of conducting classroom observations and/or directly consulting with the child’s educators over multiple conversations. At the same time, neuropsychological evaluations are better positioned to provide a more objective evaluative process. When school-­based clinicians evaluate children for special education purposes, there is an unavoidable dual relationship that can potentially prevent schools from accessing essential information. For instance, parents may feel uncomfortable sharing personal information about the child and/or family system that can be critical for understanding the child in his or her context. Although school assessments do not typically lead to diagnoses, this information still can drastically change impressions regarding the source of a child’s difficulties, which in turn informs intervention planning. When a child is being considered for special education eligibility, he or she participates in a multidisciplinary school assessment. Schools are required to evaluate all areas of suspected disability. As such, the domains assessed can vary widely based on the child’s presentation and the school’s determination of need for testing; whereas some assessments may be quite thorough, others may be relatively brief and targeted. It is important to remember that a school’s role in these circumstances is to determine whether a child has a disability. For some children, this emphasis can inadvertently limit the scope of an evaluation as well as the Team’s ability to document a child’s vulnerabilities, especially when the interpretation of the data focuses primarily (or solely) on whether a child has a learning disability. This is particularly true for children with medical conditions whose deficits are not easily captured by targeted testing and especially by standardized academic assessments. In these instances, the child may be at risk for being found ineligible for special education services even when his or her daily academic performance is clearly limited by an underlying medical condition. Similar outcomes can arise for younger children with dyslexia (e.g., in grades 1–3) who are able to compensate for decoding deficits by memorizing a finite number of sight words; these children may perform well on targeted academic testing, especially if their fundamental reading skills (i.e., phonological awareness, nonword reading/decoding, and reading fluency) are not assessed. In contrast, neuropsychological evaluations are uniquely positioned to delve more deeply into the child’s cognitive and academic abilities so as to provide an understanding of (1) how the child’s medical and/or developmental issues affect brain–­behavior relationships; and (2) how related impairments are adversely impacting the child’s educational performance (Ernst et al., 2008). Neuropsychological evaluations are also designed to understand the totality of test results through a single lens focused on the whole child. In contrast, most Team evaluations are conducted by a number of specialists (e.g., speech–language therapist, occupational therapist, psychologist,



Reports for School‑Age Children 37

educational specialist), who each summarize and formulate their impressions separately. For children who have clear and consistent cognitive profiles, this approach can effectively document a child’s disability and associated needs. However, when children present with variable cognitive performances, especially in the context of executive dysfunction (a common finding in children with brain-­related disorders), his or her performance across a large test battery can be inconsistent. In a school assessment model, this can lead to a number of different conceptualizations and impressions regarding the child’s needs, much akin to the idea of the six blind men and the elephant (where each man feels a different part of the animal and comes up with disparate hypotheses as to what they are feeling). When these seemingly incongruent results are not interpreted through an integrative, brain-based lens, the child’s cognitive profile and associated vulnerabilities can be minimized, misunderstood, or overlooked entirely. For some children, this may lead to a decision of ineligibility; for other children, these interpretations can lead to well-­meaning, but misdirected and/ or inefficient interventions. In contrast, the pediatric neuropsychologist’s appreciation of brain–­ behavior relationships and the application of this knowledge across the entire neurocognitive profile can better support a more integrative interpretation of the findings. Of course, this means that the report should not only document the child’s cognitive strengths and weaknesses, but also provide an explanation for the child’s cognitive profile in the context of relevant etiologies, associated risks, and recommendations. The report should be written as a stand-alone document that (1) answers specific referral questions; (2) educates the child’s parents, medical providers, and school Team; and (3) provides recommendations designed to facilitate the child’s adaptation (Bernstein, 2000).

Technical Aspects of Report Preparation The length of a pediatric neuropsychological report will vary widely from setting to setting, depending on the primary focus and goals for the evaluation as well as the clinician’s style. There is no “right or wrong” way to write a report as long as the important features are addressed and the referral questions answered. However, when writing a report to best support the child’s educational needs, the following features should be considered.

Tone The report should be written with an authoritative, but respectful and collaborative tone. This becomes especially important when discussing recommendations but is equally important when highlighting a child’s educational

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history. This area is one in which clinicians can vacillate between being too forceful and demanding (e.g., “The school must provide this child with a 24-hour one-on-one aide to support his educational needs”) or too deferential (e.g., “The Team may want to provide Johnny with physical therapy at school, as it might be really helpful in supporting his recovery from his recent TBI”). A pediatric neuropsychological report should find a balance between these extremes. In other words, it should simultaneously reflect the clinician’s expertise and deference to the team process. Therefore, recommendations should be written clearly and without equivocation (i.e., “the child will need these services” rather than “the child might benefit from services”). However, whenever possible, it is equally important to acknowledge the positive work that school personnel have already provided. For example, the following was written in the case of a child who had been receiving special education services for reading for many years. Notice that the text highlights the school’s efforts while still respectfully indicating that the child needs more intensive services than the school can provide: Before discussing Johnny’s other academic risks, it should be acknowledged and emphasized that his school has committed a great deal of resources to supporting his academic development. Despite these supports, Johnny continues to exhibit very marked deficits in reading accuracy and fluency, as well as severe deficits in encoding/ spelling and written expression. In fact, the gap between Johnny’s abilities and those of his same-age peers has increased over time, rather than decreasing, indicating that while he has made some gains, he is not making effective progress. Again, this point is not being made to disparage Johnny’s school, as his teachers are very clearly committed to his educational development and have been working intensively to support him to the best of their abilities. Johnny is simply one of those students whose needs are so intense that he is unable to make effective gains within a public school setting, even when provided in his substantially separate, language-­ b ased program.

Summary of Relevant History The amount of history included in a report will vary from setting to setting. However, any details that are relevant in making diagnostic conclusions or recommendations should be highlighted so as to provide the reader with a “road map” to follow the clinician’s thinking process. This can be especially important for reports that are presented in a school setting, as diagnostic conclusions and even interpretation of the data may be reviewed



Reports for School‑Age Children 39

by others who at times will come up with alternate conclusions, especially if the neuropsychologist does not attend the school meeting (either in person or by phone).

Summary of Test Results There is no uniformly agreed upon approach to providing test scores in a pediatric neuropsychological report. Some neuropsychologists append a full table of scores to the end of the report (with or without percentiles and descriptive labels), whereas others integrate some or all of the scores into the body of the report. In either case, it is essential to provide an interpretation of the scores based on the child’s approach to the data as well as how the scores relate to the child’s overall cognitive profile. When relevant, reports should clearly explain how the child’s performance on various measures was hampered by deficits in seemingly unrelated cognitive domains. For example, the Wechsler Coding and Symbol Search subtests are ostensibly designed to measure processing speed. However, when children earn low scores on these measures due to an elevated number of impulsive errors and/or a decreased ability to remain focused on the task, these behaviors critically change the interpretation of the data, diagnostic impressions, and recommendations for intervention. It is not enough for a clinician to understand these concepts; the information needs to be written into the report so as to ensure that the document speaks accurately for itself and without ambiguity. When relevant, reports should also explain why a child may have presented differently during the neuropsychological assessment relative to his or her day-to-day school presentation and/or previous testing. For example, some children with attentional difficulties can work very hard to sit still in class, even though it takes a great deal of effort to do so. These same children may also be relatively well regulated during school assessments, in part because these assessments often occur over much shorter testing sessions. Consequently, it is not uncommon for children to be more overtly dysregulated during a neuropsychological assessment than he or she is at school. In contrast, there are other children who may be more dysregulated in a classroom than he or she is during individualized, one-on-one testing sessions. Although each of these circumstances are a reflection of the child’s environment and associated expectations, if the difference is not directly addressed within a report, school personnel may discount the findings of the neuropsychologist because the report does not appear to capture the student they see on a regular basis. This discussion also provides a perfect segue to explain the child’s needs for movement breaks and other accommodations that may not have been apparent due to the child’s attempts to hide his or her difficulties at school, or to explain how an increase in external structure can support a child’s ability to better attend in class. Finally,

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interpretive comparisons regarding academic performance should be made relative to previous testing results. This should include a discussion as to whether the child’s performance reflects meaningful growth, ineffective growth (i.e., he or she has made some progress but not enough to close the gap between his or her peers), or regression (i.e., a loss of skills).

Diagnostic Conclusions The report should clearly and unambiguously state the child’s medical and/ or psychological diagnoses. It is equally important to rule out diagnoses that others may make if they look only at the test data. Similarly, if the child meets criteria for multiple disorders, it is important to distinguish how these diagnoses are distinct. For example, if a child has both ADHD and dyslexia, it can be critical to clarify that they are in fact distinct diagnoses. For example: Although Mary’s ADHD is likely exacerbating her reading difficulties, she also meets criteria for dyslexia, independent of her ADHD (i.e., her ADHD is not causing her dyslexia and associated disability).

When an evaluation has been requested as a second opinion, it is important to explain why resulting diagnoses may seem contradictory to what others have suggested. This can be especially important if current findings now confirm diagnoses that have previously been ruled out. For example: Diagnostically, Mary’s psychosocial history, academic history, teacher report, and neuropsychological profile are all consistent with ADHD, primarily inattentive presentation (often informally referred to as “ADD”). Importantly, the impact of her executive dysfunction was evident across both verbal and visual spatial skills, and therefore, it is clearly not secondary to her language difficulties. The reason an ADHD diagnosis has not been made in the past is likely because many of her difficulties were attributed solely to her previously documented language disorder rather than recognizing how her comorbid ADHD contributes to her clinical presentation.

Finally, although the school Team determines whether a child meets the criteria for special education services, when a neuropsychologist believes the results are consistent with a disability, this position should be clearly stated. For example, a report should include comments such as:



Reports for School‑Age Children 41 Mary’s dyslexia is significantly hampering her ability to read grade-level material and contributes to her ongoing delays in spelling and written expression. In academic terms, these findings are best summarized through a language-­ b ased learning disability or a specific learning disability (affecting reading, spelling, and writing).

Psychosocial/Educational Risks and Strengths A medically diagnosed disorder is not sufficient to demonstrate a child’s disability, but clearly tying a child’s academic challenges to that medical disorder can often provide the necessary evidence to do so. Therefore, reports should include statements that specifically address how the child’s medical condition and associated cognitive profile will limit his or her academic progress without appropriate intervention. For example: Following Johnny’s gross total resection of the brain tumor, he received both radiation and chemotherapy that subsequently led to bilateral sensorineural hearing loss for which he now wears hearing aids. Johnny’s hearing loss and complex medical history will continue to have a negative effect on his language skills, other cognitive processes, and academic achievement, as well as his alertness to stimuli in the educational environment and social development. Johnny was also right-­ h anded premorbidly; however, following his surgery, he has been using his left hand, which has now become his preferred, more dominant hand. Unfortunately, his fine motor dexterity and speed are quite slow, and his handwriting, although legible, is not neat and becomes laborious over time. Consequently, he will have significant difficulties in his ability to keep up with the writing/copying of directions, notes, assignments, etc., particularly as he advances in grade.

It is equally important to describe the child’s strengths, resources, and areas of resilience, as these issues will serve to direct intervention as much as the child’s areas of weakness and impairments.

Recommendations Recommendations should be written to reflect what services the child needs to be a successful learner, or to make effective progress, in the LRE. They should be tailored specifically to the child and not written as a generic, extensive list of interventions for any student with the same diagnosis/diagnoses. They should also reflect a realistic appreciation of what the school

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can and should provide. Reports that advocate for “everything including the kitchen sink” will not be looked upon favorably and may lead the Team to assume that the neuropsychologist does not understand special education laws or the “realities” of a classroom. Additionally, when reports advocate for services that are in excess of the child’s needs, or otherwise reach beyond the neuropsychological findings, they unnecessarily set up (or perpetuate) unproductive and contentious interactions between the child’s parents and school personnel. In contrast, clinicians should not avoid detailing specific recommendations for accommodations and interventions that a child may need even when a school does not currently have the capacity to provide these services; schools are mandated to meet a child’s educational needs, even when that means hiring qualified staff to provide those services (e.g., to provide a child with a one-on-one aide for medical needs or to provide a child with a specialized reading program with a certified specialist). Finally, in addition to documenting a child’s needs for services and accommodations, an IEP will also specify a child’s placement. This can range from full inclusion in a regular education setting (with pull-out services), to a substantially separate setting or outside placement. When warranted, reports should provide specific recommendations regarding the child’s need for placement. Such reports should be written respectfully, but again in a manner that reflects the expertise and authority of the clinician. Recommendations for placement must also be realistically based on the child’s clinical needs and educational history and should include specific reasons that support the clinician’s opinion. For example: Johnny’s acquired bilateral sensorineural hearing loss will markedly limit his ability to process teacher’s instructions and lesson plans, as well as his ability to participate in classroom discussions, even with the support of his hearing aids. Consequently, it is this clinician’s opinion that he will need to be placed in a language-­ b ased classroom setting for children with language and hearing impairments.

Setting the Stage Schools are expected to serve a diverse population of children, many of whom may have extensive educational needs. They are mandated to provide specialized services for these students, often without sufficient funding to do so. This climate can lead to contentious interactions between schools and parents even when both “sides” genuinely have the child’s best interest in mind. It also means that despite a clinician’s best efforts, a child may be found ineligible for special education services, or a Team may choose to accept only part of the findings and associated recommendations in the



Reports for School‑Age Children 43

neuropsychological report. When this is considered a viable possibility, reports can be written to “set the stage” to support the parent’s ability to advocate for the child’s future needs. For example: Although Mary has previously been found ineligible for an IEP, she exhibits significant encoding and decoding deficits that will increasingly limit her ability to successfully and efficiently decode grade-level text. Indeed, although Mary has been able to get by to date, she has done so through her exceptionally well-­ developed verbal skills and memorization. She has also done so at a level that is markedly below her otherwise above-­ average cognitive abilities. If Mary is not immediately provided with intensive and appropriate services in the next year, she will be at risk for a life-long disability.

Common Mistakes There are a number of important issues clinicians should avoid when writing pediatric neuropsychological reports. Some of these are detailed below.

Confirmation Bias One of the most common errors we have seen while reviewing other neuropsychological reports is associated with a tendency to assume test results are “consistent with” a child’s medical history (whether it is a seizure disorder, concussion, new medication, etc.). In these instances, the clinician has failed to review the child’s history so as to (1) confirm that the medical diagnoses are in fact accurate and/or (2) determine whether another, comorbid etiology is the better explanation for the child’s presentation. An effective neuropsychological report does not merely document a child’s cognitive strengths and weaknesses and map it onto the reason for referral. Rather, it is the neuropsychologist’s role to sort through the psychosocial, emotional, academic, medical, and developmental histories to provide clear and accurate explanations for the source of the child’s profile.

Reports Written with Too Much “Jargon” Although the accurate inclusion of medical and neuropsychological terminology is important to conveying a child’s history and presentation, this should not be done at the expense of creating a readable document that can be understood and implemented by a child’s parents, school Team, and outside (nonmedical) providers.

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Reports That Do Not Clearly State (or Make) Diagnoses Surprisingly, we have read a number of neuropsychological reports that never make diagnostic conclusions. In other cases, diagnoses are implied but not clearly stated (e.g., “the results appear to be consistent with X disorder”). This approach can still support a child’s educational needs when he or she is being evaluated for a documented medical condition and when the child’s profile can be attributed accurately to that diagnosis. However, in outpatient settings the role of a neuropsychological evaluation is to specifically assist with differential diagnosis. Therefore, a diagnosis should either be clearly stated or, when appropriate, ruled out.

Reports That Include Pages of Recommendations That Are Not Meaningful or Specific to the Child Recommendations should be written specifically for the child based on his or her history, cognitive profile, and current needs. Although neuropsychologists can certainly rely on a “bank” of recommendations, only those that speak to the child’s specific needs should be included in the report. The recommendations should also be modified to reflect the unique characteristics of each patient as appropriate. Failing to do so not only reduces the utility of a neuropsychological report, but can also reduce the neuropsychologist’s credibility, especially for cases that become involved in the special education legal process (as it gives the appearance that the clinician did not write the report based specifically on that child’s needs). Of equal importance, recommendations that are overly broad or general leave the child’s Team, parents, and other professionals in the position of having to interpret the neuropsychological recommendations rather than implementing them. In summary, in order for neuropsychological assessments to be effective within the school setting, reports must reflect an understanding of disability criteria, as well as the rights and limits of the public school setting. For example, the school needs to provide services to allow children to make effective progress, but it is not required to provide the best possible interventions available. Effective and useful reports are concise and accurate, and avoid unexplained medical jargon. The impact of a child’s medical condition and cognitive profile on his or her educational performance should be clearly documented in a manner that justifies the need for special education services (if warranted). Finally, recommendations should be concrete, implementable, and clearly tied to the child’s needs without being overly inclusive, excessive or unrealistic. They should also be written with an authoritative but respectful tone and should be specific enough to translate into measurable goals and objectives for the



Reports for School‑Age Children 45

child’s IEP (if relevant) or clear enough to implement as accommodations in a 504 Plan.

Final Thoughts Regarding Report Writing for School‑Age Children For many pediatric neuropsychologists, report writing styles, content, and emphasis will evolve over the course of their careers. One of the best ways to ensure that reports are useful within an academic setting is to participate in Team meetings. These interactions can help to identify what kinds of test results and report writing styles can be inadvertently misinterpreted. This experience can then be used to reevaluate how such information is communicated in future reports. Collaborating with multidisciplinary school professionals as well as child advocates and special education attorneys can further improve one’s ability to write reports that are meaningful and useful within a school setting. Some clinicians can become very defensive when asked to include certain phrases or recommendations in their reports during these kinds of interactions. Although it would be unethical and inappropriate to make any changes that the results do not clinically substantiate, it is equally important to realize that clinical language does not always interface with terminology used in legal and educational settings. As the lens of the reader can change the interpretation of one’s findings, it is critical to use the correct language to ensure that your results and intentions are accurately understood by all readers. Additionally, pediatric neuropsychologists are not always aware of the many educational options and interventions that may not only be available to the child, but that would be warranted to meet his or her needs. These kinds of interactions can, therefore, be an important learning opportunity to better serve one’s patients. For clinicians who are relatively new to writing reports that emphasize academic issues a number of additional useful resources are available. For example, many states have advocacy and educational groups that provide information regarding the special education process (e.g., the Federation for Children with Special needs in Massachusetts: www.fcsn.org). In addition, a number of recent publications and websites specifically emphasize the interface of neuropsychology and the school (e.g., Ernst et al., 2008; Hurewitz & Kerr, 2011; www.wrightslaw.com).

Case Examples In order to address a wider range of issues for consideration, these case examples do not all come from the same patient. When necessary, relevant background history is provided to orient readers to the case content.

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Example 1: Summary and Interpretation of Academic Data (Part 1) Interpreting the results of academic data involves more than simply summarizing a child’s scores. This is demonstrated by Annie’s scores on the Gray Oral Reading Tests—Fifth Edition (GORT-5), reported in the following table; Annie was 14 years old at the time and in ninth grade. GORT-5 Test Scores for Annie Reading Rate Reading Accuracy Reading Fluency Reading Comprehension

Scaled score

Percentile

14  5  9 10

91  5 37 50

Less Desirable: Doctor A Annie’s reading rate was above average on the GORT-5, and her reading fluency and comprehension were average. However, she exhibited a significant weakness in her reading accuracy, which was below average. Children whose accuracy scores are this low often exhibit significant applied reading deficits that limit their ability to successfully access the curriculum. Although she did perform reasonably well on the comprehension subtest, this only reflects her ability to understand the context of the passage despite her many reading errors. More Desirable: Doctor B Annie’s performance on the GORT-5 documents an above-­ average reading rate in the context of below-­ average reading accuracy. Nevertheless, these results should be interpreted cautiously as her reduced accuracy was secondary to her very quick, impulsive, and inattentive reading style. Notably, when told she should read the passages as quickly but as well as she could, Annie anxiously responded, “If I read too fast I don’t remember it.” However, she then proceeded to sacrifice accuracy for speed. In fact, Annie made a very high number of inattentive/ impulsive word substitutions, deletions, and additions (e.g., for words like and, she, we, you, but, it). She also skipped small phrases and more meaningful words (e.g., with it, were, extreme, north) that limited her ability to



Reports for School‑Age Children 47 answer many comprehension questions. In contrast, Annie did not exhibit any actual decoding difficulties and in fact was able to read many, more complex words (e.g., synopsis, reveries, tranquility, inoperative, and exemption).

Comment on Academic Data Summary and Interpretation (Part 1) Dr. A’s narrative is technically correct but problematic as it reflects an interpretation of her scores without considering the nature of Annie’s misreads. This interpretation would likely lead to the recommendation for intensive reading services that she does not require. It could also lead to an unnecessary conflict between Annie’s parents and school personnel if the Team determines that she does not qualify for special education services because she is accessing the curriculum successfully.

Example 1: Summary and Interpretation of Academic Data (Part 2) Now, consider the alternative scenario. In this case, the scores of Mary, a rising fifth-grade student, are within normal limits, but the qualitative interpretation documents more concerning findings. Examples of her reading errors and her reading test results are summarized in the following two tables. Examples of Mary’s Reading Errors Target word Read as

Target word Read as

Nonword

Read as

distance

“distace”

frequently

“fregratly”

clurt

“curlert”

budge

“bugged”

provided

“provoided” lirst

“ilir/liser”

ruin

“rune”

disguises

“disgusting” smaut

“smat”

poise

“pose”

diseases

“disenses”

tellitry

“telli-try”

choir

“chore”

perilous

“perligous”

mudger

“mud-ger”

Reading Test Scores for Mary Test/subtest

Standard/scaled score

Percentile

GORT-5—Form A Rate Accuracy Fluency Comprehension

 8  8  7  9

25 25 16 37

TOWRE-2—Form A Sight Word Reading Pseudoword Decoding Efficiency

96 99

39 47

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Less Desirable: Doctor A Mary’s results on standardized testing document low average to average reading skills in all domains assessed. More specifically, her sight word and nonword fluency were both average on the Test of Word Reading Efficiency—­ Second Edition (TOWRE-2). Mary’s reading rate, accuracy, and fluency were in the low average range on the GORT-5, and her reading comprehension was average. These scores also reflect significant gains since her previous assessment. More Desirable: Doctor B Mary has made significant gains in reading since her previous assessment. Indeed, her scores are now within the low average to average range across all areas assessed. However, her error pattern when misreading words and nonwords documents ongoing and concerning difficulties with a number of reading patterns including diphthongs (e.g., oi, au) and blends (e.g., dg). Mary also exhibited notable difficulties when reading connected text. For example, she misread words based on context (e.g., she read it’s instead of this) and exhibited additional decoding difficulties with more challenging passages. As the passages became more complex, she also had to work harder to decode words, further limiting her understanding of the story. For instance, although Mary was able to decode some complex words such as chattered, poisons, and chemicals, it took so much work for her to do so that she was unable to attend to the content of the later (more challenging) passages administered to her.

Comment on Academic Summary and Interpretation (Part 2) Once again, Dr. A’s interpretation of the scores is accurate, but it fails to reflect the full constellation of Mary’s performance and associated needs. In this case, a strict interpretation of the scores limits the clinician and the child’s school Team from recognizing her ongoing reading challenges that are in fact consistent with dyslexia. This presentation is not uncommon in younger children with partially remediated reading disorders and is therefore important for the neuropsychologist to both recognize and highlight



Reports for School‑Age Children 49

to ensure the child receives the appropriate services for his or her associated disability.

Example 2: Summarizing Data Pediatric neuropsychologists make diagnoses based on an integrated interpretation of the child’s comprehensive history, testing results, and behavioral approach to the assessment process. At times, this leads to diagnostic conclusions that may not be overtly evident to readers who skip the text and look only at the summary of test scores. This example demonstrates how to provide an unambiguous interpretation of data when results reflect a discrepancy between verbal and nonverbal/visual–­spatial skills: Less Desirable: Doctor A Mike’s overall cognitive ability is in the average to high average range. However, testing results also reflect a discrepancy between his average to high average performance on language-­ b ased tasks and his low average to average performance on visual-­ b ased tasks. Mike also exhibited clear difficulties with executive dysfunction, including sustained mental effort, attention, impulsivity, organization, and distractibility. More Desirable: Doctor B In summary, Mike’s overall cognitive ability is in the average to high average range, as are language-­ b ased skills. His performance on visual-­ b ased tasks is relatively weaker, falling primarily in the low average to average range. However, this variability was very clearly secondary to Mike’s significant difficulties with executive functions. That is, despite his well-­ developed cognitive abilities, Mike has difficulties exhibiting his full cognitive abilities on a daily basis owing to his significant impairments in sustained mental effort, attention, impulsivity, organization, and distractibility. Consequently, the apparent split between his language and visual spatial domains is secondary to his executive dysfunction rather than a nonverbal learning disorder (NVLD). Notably, Mike’s strong capacity to understand nonverbal social cues and empathize with others is also not consistent with this diagnosis.

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Comment on Summarizing Data Dr. A’s interpretation of the data is again technically correct. However, even if Dr. A has ruled out an NVLD in his or her mind, without explicitly doing so in the report other readers may assume that Dr. A failed to recognize what is otherwise an “obvious” diagnosis. This could lead to a significant misunderstanding regarding the child’s needs as well as unnecessary and even inappropriate school interventions. For example, Mike might be placed in a social skills group to support his capacity to understand nonverbal social cues even though this is already a strength of his.

Example 3: Recommendations for Placement Less Desirable: Doctor A Joe’s test results document a severe language-­ b ased learning disability that is significantly limiting his ability to access the curriculum. Although he has been provided with special education services, they have clearly been insufficient in supporting his needs. Consequently, Joe should be placed at the XX School without delay. As such, his parents have been encouraged to share this report with his school Team to discuss these findings and associated recommendations as soon as possible. More Desirable: Doctor B Given the combined impact of Joe’s multiple disabilities, his Team will need to consider his academic placement very carefully. Although he is capable of understanding, following, and learning most grade-level content, he will continue to need considerably more scaffolding, support, and organizational structure than is typically provided in a regular classroom setting. Without ongoing and specialized support services, Joe will exhibit increasing difficulties in successfully accessing the curriculum, and the gap between him and his same-age peers will continue to grow. Although he is already attending a substantially separate program, it is unclear from his IEP whether his pull-out services are being provided in a language-­ b ased program. If they are not, it is recommended that Joe be placed in a language-­ b ased program that is capable of supporting his disabilities in all academic courses while still teaching to his otherwise intact cognitive abilities. This classroom should have a high teacher: student ratio (e.g., no less than one teacher for every four



Reports for School‑Age Children 51 to five students) to allow for the frequent repetition, reframing, and supportive education that Joe needs to learn and automatize new concepts. Given Joe’s anxiety, it will be especially important that he not be placed with children who are exhibiting behavioral difficulties within the classroom, as their acting-­ out behaviors and/ or the necessary interventions and redirections to keep them on task will almost certainly exacerbate Joe’s own anxiety symptomatology. Notably, if Joe has already been attending a language-­ b ased program, these results suggest rather robustly that this program is not meeting his needs. Consequently, consideration for an alternative and/ or outside placement (such as the XX or YY School) would be warranted.

Comment on Recommendations for Placement Dr. A’s recommendation for placement contains many errors, including a lack of appreciation or awareness of what Joe has received to date (per Dr. B’s added commentary). This will almost certainly reduce Dr. A’s credibility in the eyes of the school Team, which will further reduce the likelihood that his findings and/or recommendations will be accepted. Dr. A’s authoritarian recommendation also fails to reflect his awareness of the Team process and the fact that an outside evaluator is not in a position to independently make placement decisions (i.e., he fails to maintain a balance between respectful deference and clinical authority). Demanding a specific placement rather than a description of Joe’s programming needs may further alienate school personnel, and may also inadvertently limit the child’s options if there are other appropriate settings for his needs. This approach can also unnecessarily increase tension between Joe’s parents and school if the Team disagrees with Dr. A’s assertions. In contrast, Dr. B acknowledges that Joe’s needs still might be met by his school if he has not already been placed in a language-­ based program as described in the report. No specific schools are mandated for placement, although several are recommended, and more importantly a description of his specific needs is provided. This would allow the school Team to agree upon Joe’s academic needs and the setting even if they believe that XX School is not the correct placement for him.

Abridged Sample Neuropsychological Report The sample report in Appendix 2.1 (pp. 54–61) summarizes the neuropsychological assessment of Joe Bruin, a 7-year, 8-month-old boy with a history of articulation delays, attentional difficulties, and anxiety. Joe was

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referred for this neuropsychological assessment by his pediatrician, Community Doctor, MD, to document his neurocognitive strengths and weaknesses, assist with differential diagnoses, and provide recommendations for intervention. This is an abridged report, which includes the summary of test results, diagnostic considerations, and summary of the child’s academic and social risks. It also includes some, but not all, of the academic recommendations that might be included in a typical report. Notably, a separate section relating to interventions outside of school, including his emotional adjustment, is not included here but would be in an actual report. This report illustrates many of the technical aspects described above, including those relating to data interpretation, differential diagnoses, recommendations, and tone. References Ahearn, E. M. (2008). State eligibility requirements for special education. National Association of State Directors of Special Education. Retrieved November 15, 2014, from www.nasdse.org. Baron, I. S. (2004). Neuropsychological evaluation of the child. New York: Oxford University Press. Bernstein, J. A. (2000). Developmental neuropsychological assessment. In K. O. Yeates, M. D. Ris, & H. G. Taylor (Eds.), Pediatric neuropsychology: Research, theory, and practice (pp. 405–438). New York: Guilford Press. Blaskewitz, N., Merten, T., & Kathmann, N. (2008). Performance of children on symptom validity tests: TOMM, MSVT, and FIT. Archives of Clinical Neuropsychology, 23, 379–391. Bush, S. S., Ruff, R. M., Troster, A. I., Barth, J. T., Koffler, S. P., Pliskin, N. H., et al. (2005). Symptom validity assessment: Practice issues and medical necessity NAN policy and planning committee. Archives of Clinical Neuropsychology, 20, 419–426. Carone, D. (2013). Mild traumatic brain injury diagnosis: Principles and pitfalls. NAN Bulletin, 27, 11–15. Donders, J., & Kirkwood, M. W. (2013). Symptom validity assessment with special populations. In D. A. Carone & S. S. Bush (Eds.), In Mild traumatic brain injury: System validity assessment and malingering (pp. 399–410). New York: Springer. Ernst, W. J., Pelletier, S. L. F., & Simpson, G. (2008). Neuropsychological consultation with school personnel: What clinical neuropsychologists need to know. The Clinical Neuropsychologist, 22, 953–976. Fletcher, J. M., Coulter, W. A., Reschly, D. J., & Vaughn, S. (2004). Alternative approaches to the definition and identification of learning disabilities: Some questions and answers. Annals of Dyslexia, 54, 304–331. Heilbronner, R. L., Sweet, J. J., Morgan, J. E., Larrabee, G. J., Millis, S. R., & Conference Participants. (2009). American academy of clinical neuropsychology consensus conference statement on the neuropsychological assessment of



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effort, response bias, and malingering. The Clinical Neuropsychologist, 23, 1093–1129. Hurewitz, F., & Kerr, S. (2011). The role of the independent neuropsychologist in special education. The Clinical Neuropsychologist, 25, 1058–1074. Individuals with Disabilities Education Act (PL No. 101-476), § 20 U.S.C. Chapter 33. Amended by PL No. 105-17 in June 1997. Regulations appear at 34 C.F.R. Part 300. Retrieved November 15, 2014, from www.gpo.gov/fdsys/ granule/STATUTE-111/STATUTE-111-Pg37/content-­detail.html. Individuals with Disabilities Education Improvement Act. (2004). United States Department of Education. Retrieved from http://idea.ed.gov/explore/view/ p/%2Croot%2Cstatute%2C. Loring, D. W., Hermann, B. P., & Cohen, M. Y. (2010). Neuropsychological advocacy and epilepsy. The Clinical Neuropsychologist, 24, 417–428. Rehabilitation Act of 1973, 29 U.S.C. § 794. Retrieved November 15, 2014, from www2.ed.gov/policy/speced/reg/narrative.html.

Appendix 2.1

Abridged Sample Neuropsychological Report for Joe Bruin Impressions and Recommendations Joe’s overall cognitive ability is in the average to above average range. However, his ability to demonstrate these skills is limited by his executive dysfunction (e.g., difficulties with attention, sustained mental effort, working memory, and cognitive impulsivity). Joe also exhibits clear difficulties with behavioral regulation. Within this context, language and nonverbal/visual–­ spatial skills were equally developed, falling in the average to above average range; relative weaknesses across tests from both domains were secondary to his executive dysfunction rather than actual cognitive difficulties. Learning and memory were also very clearly vulnerable to difficulties with sustained attention as well as relative weakness with organization. Joe learns best when information is intrinsically organized for him (e.g., for stories) and when it is not presented in a way that taxes his attentional abilities. Finally, parent report, teacher report, and psychosocial history all highlight significant anxiety associated with performance-­ b ased fears, and a need for predictability, consistency, and a reliance on routines. Additionally, Joe acknowledged a tendency to worry about the safety of things he loves. Academically, mathematic computation is vulnerable to inattentive/impulsive errors but still falls in the high end of the average range. Reading, spelling, and written expression are more variable, with performances falling in the below average to low average range. Notably, even Joe’s low average scores reflect performances that are well below cognitive expectations. Additionally, a qualitative review of Joe’s errors suggests greater difficulties than his scores might otherwise indicate. More specifically, reading errors were secondary to (1) ongoing difficulties with decoding, including an inability to accurately and/or consistently read consonant blends or vowel teams, or to decode using any strategy beyond slavishly sounding out each letter; (2) difficulties correctly blending letter sounds even when he did decode them accurately; (3) ongoing letter confusion (e.g., for b/p/d); (4) a tendency to impulsively guess words based on their initial few letters or the context of the passage; and (5) a vulnerability for making inattentive/impulsive insertions/deletions and substitutions of smaller words and suffixes, especially when reading easier text. Joe’s reading fluency was also slow and labored despite his vulnerability for impulsive errors, and his spelling reflects a lack of awareness of many common rules, as well as letter confusion (e.g., v/w). Not surprisingly, written expression was also markedly limited by spelling challenges.

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Diagnostically, Joe’s psychosocial and academic history is consistent with attention-­ deficit/hyperactivity disorder (ADHD). His behavioral presentation and neuropsychological profile are also consistent with this diagnosis, as testing variability was primarily related to his deficits in executive functioning, and Joe was especially behaviorally dysregulated throughout this assessment. Test results are also consistent with dyslexia (i.e., a specific learning disorder with impairment in reading). Joe is unable to decode novel words (and nonwords) quickly or accurately, and he continues to present with a below-­ average naming speed (a skill set that is tightly correlated with reading ability). He also exhibits clear difficulties with encoding (i.e., spelling) and written expression that are best captured through a specific learning disorder with impairment in written expression. The challenges associated with both learning disorders area are best described from an academic perspective through a language-­ b ased learning disability or a specific learning disability (affecting reading, spelling, and written expression) that will warrant ongoing specialized services. However, Joe’s ADHD and learning disorders/disabilities are not sufficient to explain his full presentation. He also presents with anxiety symptoms relating to safety and performance-­ based fears, as well as a strong need for order, routine, and predictability. These symptoms are best captured through the comorbid presentation of generalized anxiety disorder and social anxiety disorder. Joe also presents with obsessive–­ compulsive traits, but they do not currently meet the threshold for formal diagnosis. Although seemingly counterintuitive, in some ways, his anxiety has actually contributed to clear strengths. For example, when he is attentive, Joe can be very perceptive about how others are thinking or feeling, which helps him to connect with his friends and maintain these relationships. Because it is so important for Joe to be seen as a “good kid,” he also exerts a great deal of effort to hide his challenges from others, at least when he can. His anxiety also helps to drive him to succeed, even though it requires a considerably higher amount of effort than might be expected for others. Nonetheless, his anxiety also contributes to his inability to tolerate frustration or transitions easily, as well as his reliance on routines. Additionally, Joe is likely experiencing some degree of anxiety at all times, especially when he is at school, given the inherent evaluative process in an academic setting. Joe’s current teachers appear to have a solid understanding of how he can struggle in this domain. However, it is important to note for future teachers that Joe is not being “oppositional” if he repeatedly engages in unwanted behaviors even after redirection; teachers will need

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to understand that this is due to his difficulties with behavioral dysregulation, attention, and sustained mental effort (which are not entirely under his control). Thinking about Joe as an oppositional child will inadvertently lead teachers to implement behavioral plans that will actually exacerbate rather than support his emotional and behavioral difficulties.

Educational Risks When children have both ADHD and an anxiety disorder, the presentation of their symptoms can be confusing, and even misleading. For this reason, it is helpful to further explore how these two characteristics may present. For example, although Joe does have perfectionistic tendencies, he will often work quickly, inattentively, and impulsively when faced with tasks he feels are well within his ability level. However, when task complexity increases, he has greater difficulties remaining on task. At other times, Joe may be very quick to give up on tasks if he is feeling uncertain of his ability to perform “well” and when his difficulties with sustained mental effort make it too challenging for him to exert himself to find the answer. Because of his ADHD, Joe can also find it challenging to attend to, understand, and retain orally presented information, which in turn limits his ability to efficiently encode new information and to access it when he needs to share his knowledge with others. Joe’s performance-­ b ased anxiety and associated cautious approach to tasks can exacerbate these difficulties and further reduce his output. For example, it places him at risk for decreased “comprehension skills,” as Joe may be prone to taking a more concrete and even rigid approach to interpreting directions. Similarly, his anxiety may limit him from accurately drawing inferences, especially when he has no way of confirming that his answers are correct. This ambiguity can be especially distressing for children like Joe and contributes to his reluctance to answer questions or initiate tasks even when he is more than capable of providing accurate responses. As he progresses in school, Joe will also be at risk for overthinking problems and ruminating on possible options, which can further slow down his output. However, on other occasions he will be at risk for reading directions too quickly or skipping them altogether, further reducing his ability to follow written instructions accurately. In other words, he will be at risk for misreading directions (or text), reading directions too quickly, and/or putting too much emphasis on being “exactly right,” which may lead him to overinterpret their meaning. Consequently, he might find himself answering the “wrong” questions



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and/or requiring extra time in order to demonstrate his range of knowledge. More generally, Joe’s difficulties with sustained mental effort and attention are limiting his ability to follow multiple step directions and to complete tasks within an expected time frame. He may be prone to giving up on tasks even when they are well within his cognitive ability because it takes so much work (or mental effort) for him to finish them. Joe will also have greater difficulties learning through “listening” rather than “doing.” In other words, unless lessons have an applied hands-on component and he is given some degree of individualized assistance, he will find himself unable to consistently attend to, understand, and automatize new skills. Before discussing his other academic risks, it should be acknowledged and emphasized that Joe’s school recognized his language-­ b ased learning disability at a very young age and has been providing an increasing level of services over the past two years. However, despite these supports, Joe continues to exhibit very concerning deficits in reading accuracy and fluency, as well as deficits in encoding/spelling and written expression. Although he has been making some progress, the gap between his abilities and those of his same-aged peers has increased over time (i.e., his progress has not followed the same rate as that of his classmates). Consequently, as he prepares to enter third grade, these deficits will increasingly limit his ability to successfully and independently read and write at his grade level and/or cognitive ability. Consequently, these results indicate that Joe requires an increase in the intensity and frequency of his language-­ b ased intervention. Without such services, his disabilities will significantly limit him from demonstrating his knowledge through written expression because of difficulties he has in reading his own responses so as to edit, correct, and improve upon his work. His disabilities will also significantly limit his ability to adequately and efficiently understand written directions, let alone read or learn from textbooks or other written resources. He will also be at similar risk for difficulties even when completing “nonverbal” tasks such as math or science when there is an emphasis on word problems or novel vocabulary.

Strengths and Recommendations Strengths Fortunately, Joe has many factors working in his favor. In particular, most of his cognitive abilities are well within the average to above-­ average range. He is also a very sweet and

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endearing boy who is motivated to please others, and he can work tenaciously when he is able to sustain his attention and mental effort and/or when he is not feeling emotionally overwhelmed. His teachers should be able to draw on these resources to promote his school progress. Joe’s psychosocial adjustment will also continue to be fostered by the ongoing support of his family, teachers, and health care providers. Ironically, it is because of these strengths that Joe may confuse some people in an academic setting. In particular, teachers and other caretakers should realize that his eagerness to please others will often mask his cognitive weaknesses, and he will actively attempt to hide his anxiety and learning difficulties whenever he can (as it is his goal to look as “normal” as possible). On some occasions (and as his teachers have already recognized), he may have difficulties completing work because he is feeling emotionally overwhelmed. However, at other times his challenges may be due to his difficulties with attention and sustained mental effort. At other times, he may be having difficulties understanding how to approach and/ or organize the task at hand. Thus, in those instances when he appears to not be performing up to his potential, teachers will want to carefully consider the source of his problems and determine whether he is having problems because of his (1) ADHD and executive dysfunction (2) reduced tolerance for frustration and associated tendency to become emotionally overwhelmed; or (3) compulsive need to manage his environment before he can follow directions or classroom expectations.

Recommendations The combined impact of Joe’s ADHD, anxiety disorders, and language-­ b ased learning disability contributes to a significant disparity in his ability to independently access the curriculum, make effective progress, and perform to his potential given his otherwise strong cognitive skills. He should continue to qualify for services under his current specific learning disability, as well as through the Health Impairment (ADHD), and Emotional Impairment (anxiety) designations. Notably, research shows that children who do not receive appropriate remediation for reading by fourth grade are likely to exhibit some degree of reading disability throughout their lifetime. Consequently, the next two years will be critical in ensuring that Joe receives the education he needs to succeed. Although it is possible that he can make the necessary gains in his current setting, with an increase in targeted services, his school Team will need to monitor his progress closely. If he does not begin to close the gap between himself and his peers in the next year, he will require placement in a substantially



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separate, specialized language-­ b ased program that can support Joe’s language-­ b ased disability while simultaneously allowing him to access grade-level curriculum. This placement should include a high teacher:student ratio that focuses on his reading and writing skills in all academic classes and that is designed to serve children with similar cognitive profiles (i.e., children with average to above-­ average cognitive abilities) and “typical” social skills, but who also have language-­ based learning disabilities. Given these concerns, I encourage Joe’s parents to share this report with his school and recommend that his Team incorporate the following recommendations into his IEP: 1. Ongoing, specialized reading intervention is clearly warranted, as is associated support in encoding/spelling and written expression. This intervention should be provided daily and include at least 60 minutes of specialized instructional time with no more than three children who are in need of the same level of instruction. If it is not already, this intervention should be based on an empirically based, multisensory reading program (such as Wilson or Orton-­ Gillingham) that is provided by an instructor who is fully certified in the program being implemented. Notably, he should not be taught using an intervention program that encourages (and/or requires) “guessing” at words based on context or pictures, as he is already attempting to do this and it is leading to significant misreads. Benchmark goals should be updated to specifically indicate the sounds that he will be expected to master (which should be developed based on the reading program materials). He will also require reading fluency goals that specify his reading rate (in words correct per minute) based on a specifically stated text level so as to clearly monitor his progress. 2. Joe’s spelling goals and intervention will need to be more systematically spelled out in his IEP. Specific sound patterns that he is expected to learn should be outlined and should map onto the reading interventions he is receiving (i.e., he should be working on similar sounds in both reading and spelling interventions whenever possible). 3. Joe experiences significant difficulties with attention and sustained mental effort. He is also easily distracted by both his own thoughts and external stimuli. Therefore, he should continue to be provided with preferential seating as a means of helping him focus better in the classroom setting. In particular, he should sit in a part of the room that will limit distractions (either from friends, windows, or other “engaging” interests) and increase the likelihood that he will attend to the instructor. Care should also be taken to ensure that he is

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not sitting near other children who will distract him through their own behavioral dysregulation. 4. Even more than other children his age, Joe will also require the use of “hands-on” activities that promote active participation. When he does work independently, he will need close monitoring and frequent, discrete prompting to ensure that he is staying on task. 5. Joe will not always attend to, remember, and therefore understand and/or follow, classroom instructions. At times, he may be reluctant to admit his confusion to his teacher or to ask for clarification because he does not want to look “bad” or open himself up for possible criticism. Consequently, his teacher should repeat directions and/or provide written instructions (at his reading level) for his reference. Joe will also be more likely to remember information if it is presented with direct ties to already familiar material. 6. Teachers should continue to allow Joe to take short breaks to address attentional difficulties. This may need to be done both during and between activities. For example, they could allow him to collect papers or pass out handouts, or engage in other activities that allow him to move around in class while working on academic tasks. Some schools have developed “gas stations” where children are able to engage in motor tasks to improve their focus. Ongoing consultation with his school’s OT may be useful to create such a station in his classroom if this is possible. However, care should be taken to ensure that any use of fidget toys does not inadvertently lead to further distraction. 7. Joe requires the physical, emotional, and cognitive release provided by recess and gym classes even more than most of his peers. These opportunities to have free time and to burn off extra energy should never be removed as part of a behavior plan or intervention (e.g., if he forgets to complete homework). To my knowledge, this has not yet happened to him, but it is worth highlighting given his significant need to have downtime built into his day. 8. As academic demands increase, Joe’s ADHD and associated executive dysfunction will place him at increasing risk for difficulties with written output, which will be exacerbated by his language-­ b ased learning disability. For example, he will find it challenging to develop the content of his stories while simultaneously focusing on rules for spelling, punctuation, and struggling with his word-­ finding difficulties. Joe’s difficulties with organized verbal output will also impact his ability to write at a level that is otherwise commensurate with his level of verbal knowledge. Consequently, Joe should be taught a



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“process” approach to writing whereby he learns to brainstorm ideas on a topic, organizes these ideas in an outline, writes an initial draft using this outline, and then performs multiple edits (e.g., initially for organization and content, then for spelling, then grammar, etc.). While these skills are generally taught in elementary school settings, it will be especially important for Joe to automatize the process so that he has more cognitive “energy” left to help him compensate for his executive dysfunction. This will require specialized instruction and associated IEP goals to monitor his progress. 9. Joe’s ability to make inferences is often better than his actual performance on such tasks. This is related, at least in part, to his anxiety especially around ambiguous or open ended questions and tasks and putting himself “on the line.” Consequently, he should be taught specific strategies to pull out relevant information out of readings and lectures and to summarize the material in his own words. This will also help him to gain more confidence in his ability to accurately make inferences from texts and will improve his overall reading comprehension skills.

Chap ter 3

Neuropsychological Evaluation of the Medically Complex Child Marsha Vasserman Ida Sue Baron

C

hildren with medically complex conditions present unique challenges to the many professionals who provide them direct and personalized care. The challenges encountered in their treatment regimen often extend well beyond the acute stages of illness to long-term effects related to psychosocial development, cognitive development, educational accomplishment, and ultimately occupational attainment. At each stage across varied settings, pediatric neuropsychologists have specific opportunities to evaluate and treat children and adolescents experiencing a complex medical course. However, optimal consultation in service of the child, family, and treatment team is dependent on the specific medical event and context in which consultation is requested. Medical care and technological advances have also had an impact on the current landscape of care, and lifesaving treatments and procedures are in continuous development. Medical and psychological research substantially increased rates of survival for several conditions that once were terminal and others that were so severe as to not warrant concern about future outcome. Yet, these advances have also resulted in greater disease burden and an increased focus on promoting optimal quality of life and functional outcomes. Furthermore, as the probability of mortality lessens and the likelihood of morbidity increases for a longer lifespan, the role of pediatric neuropsychologists has also shifted to include transition planning from childhood to adolescence and young adulthood (i.e., to a lifespan model), as well as rehabilitative and cognitive therapies. In this chapter we highlight the importance of the context in which the assessment takes place (e.g., inpatient vs. outpatient; intensive care

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unit [ICU] vs. standard room) and focus on the targeted recipients of the results of a neuropsychological evaluation. These circumstances guide the assessment methods selected, as well as content and form of an intended thorough, yet succinct and pragmatic, evaluation report. Our discussion is specific to the evaluation of children with medically complex conditions, with additional focus on the implications of such a dire circumstance as an acute, perhaps life-­threatening, illness or sudden severe injury with longterm implications for the family and caregivers. We have three main aims. First, in advance of any discussion of evaluation and report preparation for children with medically complex needs, it is useful to review what is meant by medical complexity. Second, we review specific assessment, family and long-term prognostic issues that are typically encountered in serving this special population. Third, we conclude with principal considerations and suggestions when generating written reports regarding the patient’s neuropsychological status, providing examples of how to effectively communicate evaluation results in writing for those caring for the medically complex patient.

Complex Medical Conditions Definitions of medical complexity have been inconsistent. To address this problem, Cohen et al. (2011) proposed a definition of medical complexity that identified four components. First, children with a medically complex condition have substantial needs that can include medical care, specialized therapeutic services, and special education needs. Together, these needs exert important influences on the family, resources, and time. Second, children with a medically complex condition have chronic conditions that are severe and/or result in medical fragility. Third, children with a medically complex condition experience functional limitations that require assistance from a wide range of professionals. Lastly, these cases inevitably involve high health care utilization. Acceptance of this four-part definition omits many chronic conditions from consideration as medically complex. For example, a child born with a ventricular septal defect that is now asymptomatic, or well-­managed, would not have a medically complex condition under this definition, even though the medical condition may become life threatening or at some future time require chronic medical care. In contrast, a teenager with longstanding, uncontrolled insulin-­dependent diabetes mellitus who has peripheral neuropathy and vision loss would meet this definition of medical complexity. Thus, it is important to consider current and predicted associated functional limitations and health care impact, and not just the condition and its chronicity. Although Cohen et al. (2011) provide a comprehensive and inclusive definition, other definitions have also been proposed. In fact, because of

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the multiple methods of defining medical complexity and chronicity of disease, prevalence research in these populations has often been inconsistent. Some definitions have focused on the chronicity of illness, whereas others have emphasized the functional impact of the medical condition (Van der Lee, Mokkink, Grootenhuis, Heymans, & Offringa, 2007). In this chapter, we apply the term “medically complex” to children whose illnesses are chronic, persistent, or predicted to last longer than one year, (Stein, Bauman, Westbrook, Coupey, & Ireys, 1993); result in limitation of function; and, require that treatment providers provide acute or long-term medical care and interventions. A common, important, but limiting issue that often arises when evaluating children with medically complex conditions is that there is often an initial lack of clarity regarding the symptom presentation and appropriate treatment course. Symptoms may result from multiple alternative etiologies and the treatment course may differ depending on which clinician is conducting the evaluation and recommending treatment strategies. Thus, it often becomes the responsibility of the neuropsychologist to obtain comprehensive records and integrate this diverse information from multiple sources, with the intent that this thorough review will disambiguate the commonly contradictory information that is perplexing to the child and family. The neuropsychologist’s ability to formulate a cohesive and meaningful summation based on disparate sources of information is a critical role in these complex circumstances. Another important issue is that available treatments for medically complex illnesses may place a heavy cognitive burden on the child, which in a context of concerns about medical management is often not fully appreciated by either the medical team or family. This burden is often not given its due significance by the medical community in the circumstances of a life-­threatening condition when survival is the primary treatment goal. The neuropsychologist then has an important responsibility to identify and highlight the combined effects of these many variables on the child’s current functioning. Ideally, the neuropsychologist will be able to anticipate and prognosticate for the medical team and family about the expected immediate developmental course, as well as any long-term effects that might persist beyond the acute period, absent appropriate intervention. Identifying cognitive deficits that may interfere with one’s ability to follow medical regimens (e.g., memory deficits that may lead to missed medication doses) is also necessary in order to develop proper strategies to increase treatment compliance. The family faces enormous hurdles when a child has a medically complex condition. First and foremost, family members must begin the process of understanding myriad facts about a disease and its treatment regimen with which they have little familiarity. Simultaneously, they experience the enormity of what it means to have a critically ill child and the accompanying



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range of emotions that may adversely affect their ability to make the best decisions in service of their child’s health and welfare. Moreover, parents and the ill child’s siblings often differ in how they cope with and manage stress (Goldbeck, 2001; Knafl & Zoeller, 2000). Family functioning can be expected to be responsive to these individual coping strategies, the shortand long-term effects of prolonged treatment regimens, and the ill child’s resultant health and psychological outcomes (Shudy et al., 2006). Second, an added family burden is how to understand the information provided by multiple specialists encountered in the course of disease diagnosis and treatment. Families struggle when inconsistent prognoses are conveyed by the diverse providers caring for their child (Aitken, Mele, & Barrett, 2004). These conflicting messages have the potential to cause confusion and decrease trust in the clinical team. A major source of parental stress relates to the effort to ensure informational continuity between providers and systems. In essence, parents find they have to become a conduit of informational exchange, even though they may have limited understanding of the information they are relaying (Miller et al., 2009). A major source of sibling stress may relate to perceived ineffectiveness in making their sibling healthy again, guilt that they somehow contributed to the unfortunate circumstance, or even jealousy over parental attention being directed toward the ill sibling for an extended time. Provider continuity across disciplines is a particularly important supportive measure for patients and families. Furthermore, the potential for a breakdown in informational continuity is not solely confined to the medical setting but is also common in the communications between medical and educational personnel (Lash & Scarpino, 1993; Miller et al., 2009). Third, families with medically complex children often experience a significant financial burden. Financial obligations added to an already heightened emotional state can be both draining and devastating, weakening the family’s coping abilities while also absorbing carefully saved resources. Further, effective and approved treatments for an illness may be in limited supply, expensive, and not covered by insurance, or exclusively experimental and not accessible except with compassionate care dispensation by a pharmaceutical firm. A risk of relapse and of a need for further treatment following initial treatment is a further burden. Finally, for certain conditions, the impact of the illness on quality of life and cognitive functioning is so great that parents must rethink their personal expectations for their child’s future functioning. For others, the entire family structure must grasp the hard realities of end-of-life care. Thus, the role of the neuropsychologist extends beyond that of assessment to a more nuanced role in recommendations related to the child’s treatment, psychotherapeutic and educational needs, and for the multiplicity of family issues that ensue.

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Assessment Issues In pediatric neuropsychology, it is essential to have a developmental framework that is responsive to salient maturational factors. For a child with a medically complex illness, this framework should consider the child’s chronological age, current acquisition of developmental milestones, the expected future trajectory consequent to the medical insult, the chronological age at onset of the disorder, and the presence of psychological consequences (Baron, 2004; Spevack, 2011). Cultural factors, educational experience, as well as family dynamics and influential sociodemographic factors, also must be considered. However, several additional confounds arise for children with medically complex conditions owing to their different experiences and environmental exposures compared with their typically developing peers. For example, a child undergoing an extended treatment protocol for acute lymphocytic leukemia is likely to spend prolonged periods in the hospital, which directly impacts the child’s educational experiences and opportunities (a cognitive and educational impact) (Barrera, Shaw, Speechley, Maunsell, & Pogany, 2005) and results in fewer adaptive social experiences (Schultz et al., 2007). Concerns about test reliability and validity in the assessment of a child with a complex medical condition arise across both inpatient and outpatient settings. As described by Baron (2004), inpatient test sessions often have inherent obstacles that interfere with the aim of assessment of optimal performance across multiple domains of function. In contrast with assessments conducted with a scheduled outpatient visit, an assessment of a hospitalized child may have to be conducted in an environment inconsistent with recommendations for standardized testing. The hospital room may be noisy or nonprivate and therefore subject to distractions related to the care of others, and there is a high likelihood of interruptions by medical staff for scheduled routine care of the patient. A brief screening in a limited number of domains, rather than comprehensive testing across all domains, may be all that can be completed at any one time. Thus, testing may require multiple brief sessions, each presenting confounds to valid assessment. Because the inpatient setting may provide limited access to family members, and because parents must adjust their hospital visits around their work schedule and family responsibilities, an opportunity for parental interview may not be possible on the assessment day. Moreover, patient history may still be incompletely noted in medical records, limiting a full understanding of all relevant circumstances. In the outpatient setting, the examiner has greater control over the environment and an enhanced ability to establish rapport and to sample a wider variety of cognitive functions. However, even in the outpatient testing environment, the clinical needs of a medically complex child may interrupt testing (e.g., for catheterization, nutritional breaks, or emptying of a colostomy bag).



Evaluation of the Medically Complex Child 67

Further obstacles to valid assessment include complications that occur during an assessment, such as an epileptic seizure, which may delay test completion or necessitate discontinuation of testing. Additionally, in either an inpatient or outpatient setting, the child’s internal states, such as the experience of fatigue, anxiety, fear, or pain, may further complicate the evaluative process. Effects of polymedication (e.g., steroids, narcotics, psychiatric medications), can also interfere with performance on cognitive tasks (Heyer et al., 2000; Waber et al., 2000; Warrington & Bostwick, 2006). Together, these many confounds to reliable and valid assessment must be understood, recognized, and adjusted to by a flexible and sensitive examiner. Flexibility in test selection, based on behavioral observations, guided by the child’s emotional and physical state, and with knowledge of the likeliest functions that could be affected by the disorder, is imperative (Bellinger & Newburger, 2013). Although obtaining valid information in the absence of standardized procedures may be necessitated, the integrity of the process through use of standardized test procedures is not diminished. For example, when a child has a sensorineural (e.g., vision or hearing) impairment and/or physical disability (e.g., cerebral palsy diagnosis) tests must often be adapted so that the child’s true functional abilities can be understood (Warschausky, Kaufman, & Felix, 2013). Use of nonstandardized tests or of adapted methods of course comes with the added obligation to recognize that their use becomes a threat to validity, and these adjustments should be acknowledged in the prepared report. Finally, parents familiar with the roles of multiple providers involved in their child’s care may not be familiar with the special role of the neuropsychologist or with the potential benefits of a neuropsychological evaluation. Families already overwhelmed by multiple caretakers may resist yet another professional’s involvement, especially if they are uncertain as to the purpose and aims of the assessment (Stark et al., 2014). For example, if a family of a child with a chronic heart condition has had the same treatment team of surgeons and cardiologists for many years before a neuropsychological consultation is requested, the family may not understand the reason for referral or how a chronic heart condition may affect cognitive functioning (Marino et al., 2012). For such families, cognitive function may not be a priority. Thus, a recommendation to obtain such consultation may not be pursued until the goals of the evaluation are explained. Parents who were once told that their child may not survive may minimize or overlook their child’s cognitive deficits. In such cases, it may be helpful to consult with the treatment team to identify a team member most trusted by the family who can provide education about how the assessment may improve care and outcome. Validating the family’s experience, concerns, and misgivings, in conjunction with psychoeducation about the assessment process, can also help gain family trust and agreement.

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Family Issues It is well established that a child’s illness can exacerbate underlying family dysfunction. A chronically ill child places great strain on familial relationships, and while some individuals demonstrate resilience and good coping skills, others do not have, or cannot access, the same psychological resources (Heiman, 2002; Raina et al., 2005). Social support, access to helpful resources and interventions, as well as the temperament and personality of the child, have been shown to have an impact on family functioning (Goldbeck, 2001; Heiman, 2002; Raina et al., 2005). Parents may be expected to have different reactions to their child’s illness, or they may express similar feelings through contrasting methods of dealing with personal stress. It is also well established that a child’s complex medical illness or injury will often lead to parental conflict, and even increase the likelihood of separation and divorce (Goldbeck, 2001), putting further strains on an already damaged family structure. In addition, family functioning has been shown to correlate with treatment compliance more generally. As mentioned above, parents of a child with a life-­threatening illness may be less likely to value cognitive assessment, and parental resistance may result in noncompliance with referral, poor or inconsistent follow-­up, or dismissal of findings as irrelevant. Because parents are often unaware of available resources and educational options, they rely on the treatment team to help guide their decisions about their child’s medical care and also about other aspects of their now-­ changed lives. Even when they are aware of potential resources, their ability to access these services may be perceived as overwhelming or of limited utility. In such cases, the neuropsychologist has an opportunity to provide a bridge for families to access required resources. It is important to work with the case manager and others involved in the child’s care to help connect families to such appropriate resources and professionals. For example, many children with medically complex illness are entitled to financial support, although families may be unaware of the availability of this support. Similarly, children are entitled to public education until age 21, yet this critical information is unknown to many families.

Managing Long‑Term Prognostic Issues Neuropsychologists consider current neurocognitive deficits and the likely long-term impact of such impairments on functioning as the child matures. Thus, there are long-term prognostic issues to be addressed, along with managing parental expectations. A particular challenge arises with very young children. That is, their parents and providers may not be aware of the full extent of the existing cognitive difficulties since they are not overtly



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demonstrated in daily life experiences. A young child’s relatively limited demands on now dysfunctional brain systems may not be fully appreciated until older age when these abilities are challenged. For example, a neuropsychologist evaluating a 7-year-old who has executive function deficits may have to help the parent understand how such deficits might become more evident at older age. Nonetheless, neuropsychological data enable prediction. For example, requirements for independent task initiation, planning, and organization may be especially difficult for this child by middle school. Thus, the neuropsychological report is an opportunity to address the likely developmental trajectory and provide recommendations to intervene early and to address such difficulty should predicted behaviors arise. Although long-term prognostic determinations and recommendations are particularly difficult for children who demonstrate significant functional or intellectual impairments, it is an effort worth undertaking when the data are clear. Early identification leads to early intervention, and early intervention often results in a more optimal outcome than might otherwise be expected (Baron & Anderson, 2012). The neuropsychologist may have to discuss recommendations for assisted living or guardianship, which many parents find particularly difficult to accept. Similarly, a focus on educational interventions to further encourage development of functional adaptive skills (e.g., use of money and navigating the community instead of a focus on college as an outcome) may also be in the purview of the neuropsychologist.

General Report‑Writing Considerations Report writing is an art that is increasingly refined and perfected over time. Stylistic differences and alternative formats adjusted to the practitioner’s patient characteristics and setting are expected. The novice–­experienced practitioner effect becomes evident in a comparison of a report written by a neuropsychologist-­in-­training with that produced by a more experienced neuropsychologist. Less experienced practitioners are more likely to write: • Long-­ winded narratives that are wordy rather than focused on the message to be conveyed and providing the major conclusions concisely and clearly. The reader must then extract the key points, embedded in extraneous text. • Jargon that assumes every reader understands professional terminology and concepts, which often has the effect of overwhelming the reader. • Rule-bound interpretations that lead to misattribution when “textbook” lessons are applied to real-world results; for example, that a low Block Design score indicates right-­hemisphere dysfunction.

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Experienced professionals recognize that some lowered scores are within normal variability and should not be construed as indicative of impairment, particularly if other test results provide no back-up confirmation. • Using inconsistent descriptors (e.g., low average, below average) for similar levels of performance, misinforming the reader about the patterning of strengths and weaknesses. • Inadequate, overly broad recommendations that may have widespread applicability but little direct correlation for the individual child; that is, the “cookie-­cutter” approach to report writing. • Conclusions that misjudge the reason for referral and goal of assessment. For example, if the goal is to identify language lateralization prior to epilepsy surgery, then educational recommendations are not yet relevant. However, if the goal of the assessment is to determine cognitive strengths and weaknesses prior to hospital discharge, recommendations for school placement and academic interventions are expected. With greater experience, reports better reflect a maturing confidence in one’s professional opinions about brain–­behavior relationships and an ability to integrate the data in a clear and concise manner that will be universally understood.

Writing for Medical Personnel Knowledge of the above-­mentioned factors (i.e., family, assessment, and prognostic issues) in relation to a child with a complex medical condition is central to fulfilling the role of neuropsychologist in these circumstances. As part of the basic assessment responsibilities, a written report will diverge in several ways from that provided following an outpatient evaluation of a child not as seriously ill. The report format, content, and recommendations are influenced by child-­specific considerations and the reason for referral, and are written to be useful to the many readers caring for the child. That said, reports for an inpatient often differ from those written for an outpatient, those requiring transition planning, or those who require educational recommendations. For example, a presurgical report for a child who has intractable epilepsy must address language lateralization and offer an opinion about the potential for cognitive decline following surgery. This information is crucial for the surgical team’s immediate decisions, and the report has limited usefulness if it fails to address this issue. However, interventions that could ensure more appropriate self-­management are timely if the evaluation is of a child with spina bifida and hydrocephalus who is found to have, for example, executive dysfunction. Thus, reports written



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for inpatients principally contribute to immediate medical decisions and enhance understanding of a child’s cognitive course in the acute period, whereas reports prepared for an outpatient are better able to comment on a wider range of functioning and address with more accuracy the potential long-term impact of the medical condition.

Inpatient Report Writing Preparation of a report for an inpatient presents special challenges. First, the evaluation findings are often time-­sensitive and only the most relevant details need be conveyed to the physician. A multipage report is inconsistent with attending physician preference for a concise summary rather than a detailed descriptive test results section (Hilsabeck, Hietpas, & McCoy, 2014). Second, the report will be available to many readers (e.g., other attending physicians, social workers, therapists, parents, and/or academic personnel), each with a varying degree of medical and neuropsychological sophistication. Generally, a single written report is prepared for hospitalized patients. Inpatient reports prepared within a larger electronic medical record may reflect bulleted points of interest, while discharge reports and outpatient reports may read more like a narrative. Alternative report styles have to be individually developed by neuropsychologists to best suit the circumstances. For example, highlighting the key features and summary of domain-­specific performance on the first page of the report may best serve the purpose of the evaluation. Or, as one of us (ISB) prefers, a summation in a consistent one-page template that captures critical information has shown wider acceptance by medical staff than lengthier reports for an inpatient and may be included later with a longer report. An example is provided in Figure 3.1. Although such a summary template may be all that is needed by medical staff, a report written for parents requires succinct summarization of the test results, perhaps clarified with consistent descriptive ranges (e.g., below average, above average). Writing that guides parents from domain to domain while highlighting strengths and weaknesses within each category provides a strong basis for a medically unsophisticated reader to understand conclusions and recommendations. Overly lengthy or complex reports serve no reader well and will not best inform the reader about brain–­behavior relationships and targeted recommendations. Clear statements with practical significance, as well as specific recommendations that can be readily implemented, are highly desirable (Cheung, Wakefield, Ellis, Hons, & Mandalis, 2014; Farmer & Brazeal, 1998; Stark et al., 2014). A report for a medically complex pediatric case is challenging, as it must convey a substantial amount of information simply but not simplistically. Opinions vary about report length and content based on training and

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Intelligence

Average (IQ range: 90–109).

Executive function

Moderate cognitive inflexibility, left upper extremity motor organizational deficit.

Effort

Good motivation and cooperation.

Attention

Good auditory span, inconsistent visual attention.

Language

Intact receptive and expressive language; intact verbal fluency.

Nonverbal

Perceptual errors, left upper extremity sensory–perceptual errors.

Motor

Bilateral motor slowness, tremor using pencil with right hand.

Visual–motor

Below average.

Learning/memory

Poor learning and poor immediate and delayed recall of nonverbal stimuli, not helped by recognition cues.

Processing speed

Slowed information processing.

Behavior

Cooperative, alert, motivated, not clinically depressed, mood euthymic.

Focal signs

Left upper extremity speed and dexterity worse than right.

Neuropsychological impression: Results provide a valid baseline assessment prior to initial V-P shunt placement for hydrocephalus. Maximal involvement of right cerebral regions indicated by motor, visual–motor, perceptual deficits; poor nonverbal learning and memory; nonverbal reasoning deficit. Deficits are mildly reduced from prior testing, consistent with right lateral ventricular volume increase shown on MRI. Verbal and left-hemisphere functioning relatively unchanged. Recommendations: Reevaluation at 3 months s/p shunt placement. Full evaluation required to detail recommendations for school to follow. Occupational therapy for fine motor deficit should continue. IEP may require adjustment.

FIGURE 3.1.  Completed template of inpatient neuropsychological test results for a child with hydrocephalus. Courtesy of Ida Sue Baron.

mentorship. However, children with chronic complex medical illnesses are accompanied by a large volume of historical data that must be reviewed and summarized in the acute stages of an injury or illness. Lastly, written reports for inpatients become part of the medical record. The expectation for clarity is essential to the child’s immediate care. Extraneous details that encumber the reader should be avoided.



Evaluation of the Medically Complex Child 73

Outpatient Report Writing Although reports for an inpatient principally contribute to immediate medical decisions and enhance understanding of a child’s cognitive course in the acute period, reports prepared when the child is in the outpatient setting describe functioning more broadly and also obtain additional information that help address the potential long-term impact of the current medical condition. Children with medically complex conditions presenting as outpatients are accompanied by many medical and educational records that have to be distilled carefully and considered with respect to the most optimal intervention strategies once a complete diagnostic formulation is developed. This relates to evidence of functional as well as dysfunctional abilities to support their recovery. A clear timeline with prominent findings specified becomes a helpful preliminary step. In addition, the neuropsychologist may find it necessary to explain conflicting findings between various consultants, as well as any declines in functioning, and to frame previous results within a grounded neuropsychological framework. Thus, the neuropsychologist compiles an integrated history that conveys essential data in a cohesive formulation. Medical records inevitably contain errors, given the occurrence of so many consultations. The neuropsychologist must avoid further transferring such errors and must take the opportunity to correct misstatements in prior consultations by identifying and highlighting these inaccuracies for the record going forward.

Other Considerations Forensic considerations are salient even if the neuropsychologist does not accept forensic work. This is particularly true for cases in which the child has sustained a traumatic brain injury, in the event that a medical malpractice complaint is filed at a future time, or when the child’s academic progress is poor and academic programming is thought to be inadequate in preparing the child according to federal regulations. Any written report at any time subsequent to its release has the potential to be scrutinized by either plaintiff or defense expert witnesses in future legal matters. Thus, an accurate summary of the medical records that identifies inconsistencies or inaccuracies in the acquired historical data is useful. In addition, test interpretation and each aspect of report preparation are expected to be consistent with best practices and potentially subject to confirmatory scrutiny in a future legal venue, with the neuropsychologist called upon in the role of a treating provider. In cases where there are high levels of family discord, the neuropsychologists may find themselves the subject of a civil action, that is, a personal malpractice claim. Thus, cautious attention to each aspect of one’s entries in the medical records is essential. The

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information that is provided should be factual and not hearsay; that is, data that are not confirmed should not be given the weight of fact. Conclusions reached by others involved in the child’s care may be referred to but should not be reinterpreted as to alternative meaning without substantial basis. The report remains one’s own product and not just an opportunity to contest the opinions of others. Data are interpreted principally for the attending physicians in the inpatient setting and for the referring physician and parents in the outpatient setting. These different venues also have a temporal significance. Parents may not see the neuropsychologist’s inpatient note but will nonetheless be informed about its content. Yet, the non-­neuropsychologist conveying results might not have knowledge of neuropsychological principles or how data may be variable based on experience and the specific features of the child’s performance. In this instance, the report should be succinct and free of jargon. For outpatient evaluation, the parent may have preexisting understanding of information collected in the inpatient setting, or a more distorted or incomplete recollection of results in the acute period owing to the emotional toll associated with this stage. These must now be integrated and adjusted based on the new evidence of performance strengths and weaknesses obtained weeks or months after the acute episode. This is a critical time to clarify that constructs and test results are understood as to their implications about cognitive, social, and emotional responding. Errors in interpretation should be corrected, and the data interpreted in a highly personal way and with real substance as to how this particular child will manage daily activities and responsibilities. It is not a question of what range a child falls in as much as how that child will respond to the specific day-to-day encounters in personal, social, and academic venues. Parents who taught or disciplined one way prior to the insult may well need to make substantial adjustments that are not yet habitual or may not fully appreciate why these changes must occur to ensure their child’s progress. The interpretive session of the outpatient evaluation is a key time to convey this new knowledge.

Case Example All data pertaining to the case example are presented in Table 3.1.

Reason for Referral Juan was referred because he was not making sufficient progress in academic skills, with concern expressed that perhaps he was not just stabilizing but declining. His primary care physician wondered whether there was evidence of loss of neuropsychological competencies.



Evaluation of the Medically Complex Child 75 TABLE 3.1.  Test Data for Juan Test variable Intellectual functioning WISC-IV Full Scale IQ Verbal Comprehension Perceptual Reasoning Working Memory Processing Speed

Test result Standard scores 74 81 81 80 68

Language functioning Boston Naming Test CELF-4 Recalling Sentences Understanding Paragraphs D-KEFS Letter Fluency Semantic Fluency Learning and memory CVLT-C Total Trials 1–5 Trial 1 Short Delay Free Recall Long Delay Free Recall Learning Slope Recognition False Positives Sematic Clustering Serial Clustering RCFT Immediate Recall Delayed Recall Recognition Total Attention/executive functions CPT-II Omissions Commissions Reaction Time Variability Perseverations

z = –0.5 Scaled scores 7 5 7 6

(Raw)/z T = 31 (5) z = –1.5 (8) z = –1.5 (9) z = –1 z=0 z=0 z=5 z = –1.5 z=1 T-scores